Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Sammy Joe Current Page One UPDATE: 11-11-08 Sammy-Joe will be having surgery on the 4th of December for his impacted wisdom teeth and extra teeth to be removed. I hope it will go well , he was such a good boy today at the hospital , he had xrays re done and all blood tests , he was very well behaved , what a star!! Maria UPDATE: 11-8-08 Happy Birthday Christian !! Christians 16 today , I will take lots of photos and put them on tomorrow for everyone to see . Sammy-Joe still isnt well , he has lost more weight and is in alot of pain still with his mouth and teeth . We have had a busy week , Our friend Lou has been busy working on the wall to divide my office and Lounge room , his nice boss Sylvio donated all the materials and Lou donated his time , it took him a day and he did a great job , I will also include these photos , Sammy-Joe got to use the nail gun and was all hugs for Lou once he had finished the wall. it looks good and has given our house a cosier feel. Sammy-Joe has been a little quiet this week , he got a little light exposed when going to the hospital this week , we need to go again next week , so I am guessing that we will have some days full of vomit and all the after affect of light exposure , he also sleeps alot when this happens to him and some blisters all over his body . I have been busy raising awareness again and will continue on this mission for a long time , I will never give up on finding other families and I am certain there are so many children out there going undiagnosed. Thank you to all the beautiful people that have helped make life easier to us , especially this week a big thank you to Lou his family and Sylvio , we are eternally grateful to you , look out for all the photos this week Christian absolutely hates photos of himself , but I was able to get some of him and his friends , he said I can post them in here only this once ,,lol , he makes me laugh SWEET 16 and just a gorgeous brother to Sammy-Joe . Maria xx UPDATE: 10-27-08 Sammy-Joe has had a UTI , ear and throut infection for over two weeks , he finally started to feel better and today he enjoyed having fun as a Pirate , he dressed up and went around the house looking for treasure .He seems to be a little less agitated now and has been a lot better with his behaviour , the screaming seems less and the destructive behaviour seems to have disappeared . Alot of that behviour usually is from being so irritable and unwell. Maria UPDATE: 10-9-08 Sammy-Joe hasnt been very well at all , he has a lot of pain still in his teeth , still no sign of the surgery being any closer , looks like it may happen in December for Sammy-Joe . Also he is constipated from all the panadiene forte he is on and has lost ten kilos in two months , the dietician is a little concerned and wants me to increase peg feeding again . I too am concerned . I am trying to also juggle when we will have our next group , I will call all the parents soon and see what time and day suits them all . this time it may be on a Friday night and I may have a puppet show come out , I have been looking into different ideas for the kids .We have had good feedback and Sammy-Joe always asks me when our next group will be , it shows me he needs that connection to the community , I am so happy that we can finally make this all happen for him and the other children of our group , its a blessing that people are hearing us now and really putting themselves in our shoes . Thanks to Delfin and Naturform , the Community has really opened up to the needs of our family and of course our precious son , what a hard life he has had and now at least he and Christian can start having some fun . Life wasnt meant to be just about working hard and feeling sick , its meant to also be enjoyed , we have all struggled as a family the last 19 years , at least now Sammy-Joe and us can start to experience a little joy . Maria UPDATE: 9-15-08 Around here it would be about 6 pm in winter months and 9 pm in summer months , sometimes things are not open , yes some household lights bother him and also shopping centre lights do also , he burns with these , we have had our house completely modified , we have lights with UV protective casings on them , we also have metal shutters , tinted windows and no UV gets in at all , this is why his home is where he feels safest . it is difficult for other people to understand this condition , Sammy-Joe has been not well for the last couple of days because of the small amount of light exposure he received in those short trips , I think only people that suffer similar conditions can truelly understand what he is going through , or people that have ever experienced sun stroke , this is what his condition can do to him even on the gloomiest of days . I know it is difficult to understand , but I also know there are people that read this Journal everyday and leave messages for us that feel for Sammy-Joe and try hard to understand it , I am blessed by having these people in our lives because it shows true strength of spirit to give compassion and empathy , thank you to you all that keep praying and keep giving us beautiful messages of love hope and understanding Maria UPDATE: 8-19-08 Sammy-Joe is no better , still in a lot of pain and we are no way closer to being seen to have his surgery , We spent the whole day at the hospital yesterday and before they do the surgery they want to run a series of blood tests and other tests before they do surgery . So looks like we will have to wait until these are all done before even attempting to do surgery which means a longer wait , in the meantime Sammy-Joe has to just be on pain killers all the time and hope that the pain will settle a bit . Looks like also once all the tests are done if the hospital isnt comfortable in doing the procedure they will put us in a different hospital , where there are wards incase something goes wrong with procedure , which I wondered why this wasnt suggested in the first place , the Adult system is much slower and transition from Childrens hospital to Adult hospital sure is different, I know they are being cautious , but it isnt helping Sammy-Joe with his pain , I will keep you all informed with what happens next , also Christian has been running a fever for two days and isnt well , looks like he has the flu . Maria Previous: Sammy-Joe is miserable , he is in pain and is on the strongest pain killers up to 8 a day , he cant bear the pain otherwise , but still even with the pain killers as soon as it wears off he starts to feel the agony , he will be seen on Monday by the surgeon and anaesthetic guy , but this is just the pre surgery appointment , and then we will know after that the date of surgery . I am going to write to the Health minister as this is truelly a problem in Victoria , the health system is surely sucking right now , I feel so sorry for those people that a in long waiting lists waiting for surgery . What is happening to our country , we arent even a third world country and seems like our system has reached these levels where people a laying in stretchers and dying in waiting bays , its terrible I am so disappointed and disheartened by our so called system , the problem is people too easily blame our system , but its the people behind the system that need to change . thanks for listening and thanks for caring , thanks for writing to us , we really do appreciate all the letters and messages . Maria xxx UPDATE: 8-11-08 its been a very difficult time for Sammy-Joe the last 6 months still waiting on the medical dental list to have his surgery , its sad how sitting on the public waiting list is and how much agony these kids have to go through before anything is done about it , its quite distressing and appalling really . I have been calling the hospital and will be calling again today , I ve had enough of the system , because the system is really governed by the people behind it . I heard a story how a dental nurse didnt have to wait to be seen because she was a nurse , so what happens to the ordinary folk like Sammy-Joe that are just sitting in ques , its quite upsetting really to think that your credentials have an affect in where we are placed in society . Maria UPDATE: 7-24-08 It has been difficult accepting that my eldest son has a condition so rare that the sun could kill him. My other boy Christian has been my strength as well, watching them both grow as individuals has been something that a father handles silently, with pride or sadness, in my case l have to deal with both. I have been going through depression and a lot of it has been grief over not accepting what my son has to go through, also watching Christian grow and be basically like an only child because Sammy-Joe cannot keep up with his younger brother that has now taken on the older brother role. My silent wishes have been that both my sons have a `normal life'. Sometimes l find it difficult to express what l am truly feeling. Being a father, a husband, a carer has helped me to grow in so many ways. It hasn't been an easy task, but it has been a journey that l would do all over again if l had to. Despite the grief that l have been feeling l cannot imagine my life without my family. I admire my wife for all that she has tried to achieve and l am very proud of both my boys. There is no other place l would rather be than with them and growing old beside them. We have been faced with so many challenges and also so many disappointments. We have experienced hardship and pain and also so many little joys. Our recent joy and wish has been knowing that there are organisations out there such as Young Carers Victoria, Melbourne City Mission, CarerLinks North, Very Special Kids, The Lions Club and now Delfin and Naturform. These organisations have so generously helped us in many ways. Having these organisations step in has transformed all the despair into hope. The Young Carers group has helped my son Christian deal with so many challenges about his brother. It has helped him to feel important as a young carer. As his father l have been watching the change in Christian. He has changed and matured into a nice young man. He has faced being the sibling of a child with a disability head on and with strength. He has taught me to be strong. To watch a young brother protect, care and love his brother with a disability and not see him as any different, has taught me to accept. Apart from my wife, Christian has been my mentor. I love both my boys and all l want is for them both to have a comfortable and happy life. Delfin and Naturform have helped us to achieve our goal. They have joined forces to build a pavilion attached to our house which will be solar protected for Sammy-Joe. The pavilion will change us as a family. We can socialise within a safe environment for Sammy-Joe and spend more time doing things as a family and Sammy-Joe and Christian will be able to spend quality time together. We are grateful to everyone that has helped us to achieve our dreams. Thank you Joe Christian’s Story – 15 My name is Christian and my brother’s name is Sammy-Joe. Sammy-Joe has an illness, a disability and sometimes l am the only one that understands him. I don’t like people to tease him, or to say things about him. I try to protect him from that. I have now become the big brother. For only 5 years l was the younger brother and l looked to my brother for help. Sometimes l would wonder why he couldn’t talk, or do the things that others could do. I remember seeing him in hospital a lot of the time. It upsets me to see this and l couldn’t understand why he was always so sick. When he turned 13, l remember my parents crying because they were told that Sammy-Joe could die. I hated hearing that and l didn’t believe it either because l knew that Sammy-Joe was strong and tough; he sometimes wrestles me to the ground. I know that Sammy-Joe can never do the things that l can, but sometimes l wish l could just stay home from school and look after him. I take care of him sometimes during the night when my parents are too tired, or don’t hear him wake up. I know that l have to, l feel that l have to. My favourite thing to do is to play basketball, it’s my favourite sport. I like it when Sammy-Joe can watch me play outside in the dark. Sometimes we would play on the trampoline together at night, now it’s too hard because Sammy-Joe is like a four year old with his mind. Sometimes he throws tantrums and sometimes he is too sick to do anything. It’s been hard, but l like being with my family. Having the structure is going to be fun because Sammy-Joe won’t be so frustrated, there will be more room to play and he can spend some time with me in there. Marti has come to be my friend and he has made sure that l have had some things for me because sometimes l have missed out on things because my parents couldn’t afford things. It’s been good having other people that understand my situation. Christian UPDATE: 7-17-08 Hi Everyone sorry for the lack of updates , Sammy-Joe hasnt had a painfree two weeks , he has impacted wisdom teeth that need to come out and is sitting on the public waiting list , we are hoping and praying that he will move up the list quicker , at the moment he is on strong pain killers and is trying to manage with the pain ,he has lost a little bit of weight also , when he has a good day , he will spend time jumping on the trampoline and playing in the ball pool , he also loves the treadmill and bike , having the Pavilion has helped him in many ways , now he just has to cope with the pain , another thing for him to deal with , Sammy-Joe has never really had a break from being without pain and its very sad that once one thing is over another thing begins for him , to do with pain . please keep praying for my son , he needs lots of prayers Also I have the lastest Newsletter for The Friends of Sammy-Joe Foundation , if you would like me to send it to you , please email me at sammyjo2@bigpond.com.au , I can either post it out or email it to you let me know and thank you for all your prayers and good wishes and also for checking in on us often Maria xxxx UPDATE: 7-7-08 Sammy-Joe is sick again this week , we have had a very hard three days with his behaviour being amplified , its quite difficult when he gets frustrated and hard to help him through the pain especially when we dont know where the pain is coming from , he is so delightful usually , but this week he has been a nightmare , but I know it has to do with some kind of physical pain he is going through , the hardest thing about this condition is not knowing where we are heading and what can happen to Sammy-Joe , neurologically we know it is a illness of degeneration ,so everytime something happens to him behaviour wise I start to panic because I CAN TELL something is happening to him that isnt right , these children have an extra white matter film around the outside of their brains and usually this matter thickens as they degenerate , I really do hope that Sammy-Joe can have an MRI soon because this is what is concerning me , before he suffered his setback with the swallowing and chewing his behaviour amplified also , and then WHAMMO he ended up in hospital for six weeks Maria UPDATE: 5-2-08 Sammy-Joe has been feeling under the weather lately and so have I , not sure why because all seems positive around us , the builders are still working hard at doing things for the Pavillion , all is in order , The Friends of Sammy-Joe is going to meeting on Wednesday of Next week at my house , i will take some photos then so you can see the amazing people that work hard at making things happen for the kids . Sammy-Joe has to have surgery on the 21 st of May for his Peg change and I am hoping he will be ok for Open day in June , I hope he recovers well , usually our history of staying in hospital is lengthy , so pray hard that we get back home the same day . Well I am confident that things will be "up and up from UP "and "I LUB YOU " Maria UPDATE: 4-30-08 I cant believe we are nearly at the end of April , how quickly does the time fly , wow , this year seems to be speeding fast . I will be taking more photos of the structure and adding them in , they have layed the concrete on both ends , the roof is on and they have pulled down our shed , I suspect everyday will be different now I have enjoyed having the builders around and conversing with them , they have all been wonderful , this is like a fantasy world right now , where all our wishes are being granted , I think I am in some kind of fairy tale for Sammy=Joe , he is so excited about it , everyday he looks out the window and says ,"" My playgound , my playground !"" he says it woth such joy , its so wonderful to see him so happy about something being done outside , and I say to him ""soon honey it will be all finished and you can play "" He has been so sick lately , he has had vomitting and diahorea an infection in his ear and throut and also in his gums. This week I have to take him back to the dentist and see what the results of the xrays were .I am suspecting he will need surgery again in his mouth , also he needs to have surgery in his peg to remove and change the peg feeder . Sammy-Joe seems to always be in the wars when the seasons change , reading our journal history has proven that . I have my first official Newsletter and have been trying to email it out to people , I have over 100 people to distribute it to , if you would like one please let me know ASAP , AND I will post one out to you . Its The Friends of Sammy=Joe Newsletter and its our official 1st , I am so proud of what I have been able to achieve in the last three years with the help of good , generous people , and I know Sammy-Joe s name will always be remembered and admired , he is such a beautiful soul , I love him very much . My other gorgeous son Christian has been talking to me about his future , he is only 15 and is undecided what to do with his life , I remember being 15 and wondering and being confused which way I was headed , please pray for him as he goes through so many thoughts , one thing he did say is he wants to be like me , which almost made me cry because I never knew that at all , I never even imagined him thinking that , he is so quiet and calm , although at times he can be a ratbag like most teenagers , I just remind myself its a sign of goodhealth . please continue to pray for my family , family is the most important thing in the world , to be without love and care is the hardest thing in life , please pray for those who havent got family and please pray for them and reach out to them and lend a hand whenever you can , embrace eachother with warmth , kindness and love . GodBless you all and please know that I AM grateful for all that you do for us in prayer . Maria xxxxxxx UPDATE: 2-9-08 Sammy-Joe has been unwell for the last week , but has overcomed alot of it by sheer determination, putting it mildly ,he is as rough and tough as steel and will try his hardest to overcome things , even thou it may take him a little longer , he is determined not to let himself be beaten . I think we all need to learn from his attitude M. UPDATE: 1-30-08 Hello , I am finally getting the chance to write an update , Sammy-Joe hasnt been well the last few weeks , he has had another UTI and also a chest and ear infection . Sammy-Joe has had to also adjust to some new carers and its been great , he missed Reena alot ,but now has a wonderful new carer as well. I have noticed that he has lost some weight as well, his sleeping has also been allover the place , but I GUESS ITS SUMMER , THE WORST TIME FOR HIM. I will try and update as soon as possible with photos , its been while , since everything has been hacked into , I have lost some photos , but will regain new ones in the coming weeks. Maria UPDATE: 12-24-07 Take control this Christmas Merry Christmas everyone , I wanted to just remind everyone how important it is to stay positive this Christmas and to remember the true meaning of Christmas , please remember to help the less fortunate and to help people that a spending their Christmas alone , make sure that you do what Jesus would have wanted you to do , please also pray that God is remembered and that all families spend their time rejoicing and being grateful for the love they share . Remember where there is negative there is always positive ,where there is a dark cloud there is always the sun shining right behind it and the warmth of Gods love showing you a way out of whatever seems too bad , think with pure love and positive energy at all times and things can change , even miracles can happen for a brief moment . Yesterday: Today has been a pretty hectic day for us , Sammy-Joe has been well behaved the last couple of days and I am guessing that finally the UTI has gone , he is still on antibiotics and has been off the herbal meds for a month now , I will reintroduce the herbal meds as soon as I think he is well enough to tolerate them , he kept throwing them up in the end . He is also on two peg feeds a day now as he hasnt been getting enough nutrients daily as his oral intake has worsened , he isnt really motivated by food as much these days , I too havent been too motivated lately , have been going through a LUL so to speak , I have been trying to spend more time with the boys and just worry about their happiness before mine , which I guess its something that I have always really done . I want to say thank you to everyone that has offered us support this year , we have had many difficult times , but without your help and constant guidance I dont think we couldve gotten through the year , so please know that I am grateful to you all for your friendship , kindness and Good will , we appreciate every ounce of love that comes our way . I would like to say Merry Christmas to you all and please know I am going to try and write more in the journal from now on . have a wonderful Xmas and I will post some photos soon love and hugs Maria UPDATE: 12-17-07 Wow the year is nearly over , I cant believe how quickly Christmas has come around , I havent bought any presents yet , and I havent even started to think about what I am goin to buy as yet because money is so limited , its been a crazy year with so many things happening , so many different degrees of stress. but I guess in the end we get through things dont we ? usually with the good help of people that have kind hearts , thank you again to all my earth angels out there . I am reading book on how to rid yourself of negative emotions , I have found it so interesting the last couple of chapters how much truth is in this book , we do as people all of us carry so many emotions and most of them seem to be negative ones , its very true also that we need to rid of these to start seeing the true positive side to our lives , I think that is what has kept me strong through out so many of our ordeals , the positive side to everything that has happened , because I think if you flip the coin and see the otherside , well then there is a lot for us to be grateful for , Life is one , because at least we are all still here , and in all of the past years events , it could ve gone a different and more tragic way . thanks again to all of you that constantly step in and help in anyway you can , we do really feel very blessed to have you all God bless you all I will post some photos soon love and hugs Maria UPDATE: 12-14-07 Thank you to everyone for all the prayers , Sammy-Joe has had a couple of days without a carer and we also have been without a car , Joe has taken mine so he can get to work , I would like to thank everyone from Kayser Hoisary in the Warehouse for the beautiful food hampers they bought to us last week on Friday , my eyes swelled with tears and my heart was so touched by this beautiful gesture of kindness , you are all incredible and awesome friends ,, thank you ,, thank you , its amazing and incredible to know that we have such beautiful people praying for us and caring so much about us , thank you so much you truelly have helped in our time of need , I got Joe to take some photos and I will post them here soon to say THANKYOU , the food was so yummy , I also want to thank Tony and Anne for everything you have been trying to achieve for our wishes to come true for Sammy-Joe , I will keep praying hard that things work out in the way they are intended to , please keep the good prayers up , its amazing what the power of prayer can do . We love you all very much , I havent done any Christmas shopping or sent out any cards yer , please know I do wish everyone a very merry Christmas and will try and get those cards out as soon as possible . love you all Maria UPDATE: 12-12-07 Sammy-Joe isnt well today , he has another UTI , which now will be investigated further because too many have occurred in the last few months , this poor kid , he doesnt seem to get a break and neither do we , I wish and pray that things get better for all of us soon , its been very very difficult for us , I think at times life is pretty unfair to us , I have to keep my faith up that things will change soon . Joe is still very upset about things. still pretty traumitised with what happened to him , we are still basically in disbelief , but very very grateful that he is alive , I am going to list five things a day to be grateful for every one needs to I think because there are so many things people take for granted and they dont even realise . love and hugs Maria UPDATE: 12-7-07 Thank you to everyone that has been praying , what a miracle this week , we are counting our lucky stars that the only thing that we lost was the vehical and not Joe , the inconvienance is basically what we are dealing with , Joe is dealing with trauma , whipplash , bruising and sholder and neck pain , but basically a Miracle , we are very very grateful that this week turned out positive , rather than what couldve happened , not many people survive accidents with Trucks involved . thank you God and thank you to all of you that Pray for us , check on us , leave us messages and send all of you love , we appreciate everything . thank you Maria UPDATE: 12-4-07 My Hubby Joe had a car accident today at 3.20 pm ,it rained it was bucketing down here and the traffic infront of him slowed down and so did he , but the driver of the Truck behind him had other plans he kept going , put on the brakes too slowly and slammed his big Mac Truck into the back of Joes Toyota Camary , Joe was in shock when I arrived at the scene and called the ambulance , fire brigade came , police and toe truck, the car was ridden off , but Joe miraclously survived with minor injuries , tonight we are grateful for all the people that came to help and for all the wonderful people that assisted him and me , to all the people that were understanding and caring , thank you to all of you and also thanks to God and the angels for keeping Joe safe ,, pretty much a Christmas Miracle . Sammy-Joe and all of us wouldve been pretty shocked, we would be in a very bad way if we lost our gorgeous Joe , please keep up the prayers , Sammy-Joe and Christian love Joe , he is a beautiful dad , devoted husband and caring soul please pray for us please stay safe Thank you to everyone that prays for us Maria UPDATE: 11-18-07 17th of November its my birthday today ,,, Well apart from being pretty tired and feeling pretty old now ,, I guess birthdays can be fun , Sammy-Joe has been pretty amazing today ,,he remembered its my birthday and sang me Happy Birthday at 3 am ,, I wanted to sleep , but he was too excited and kept asking me for a present to give to him ,, he is so funny ,, he has been sick for two weeks with a horrible UTI and today has been the first day that he has smiled and laughed , although its been at 3 am , at least he is smiling and not miserable again , he seems to be enjoying my birthday more than I am ,, I think when you get to my age you try and forget them rather than remind your self that your one year older , cos if you dont remember I am sure your body reminds you ,,lol,, anyway apart from that , Sammy-Joe is back on antibiotics and also he has lost more weight , all up 10 kilos , I am glad he had stacked on the weight now , at least he had weight to lose ,, usually he has none and then he disappears in summer , but the last few years he has been able to cope with some of the weight loss , its just sad that he gets like this in summer , he loses his hair also and it just falls out in chunks , very sad to see . I found some Garfield slippers for him on ebay and they arrived yesterday ,, he was so excited , he kept saying his old ones were yuckky , SO WE threw them out , he loves his new ones at least his toes dont poke through , he absolutely loves Garfield , now I just have to find him some pyjamas and Tshirts with Garfield on them . I have been broke again , this time of the year is bad for everyone ,, Christian has been ok , he is enjoying playing for the PACERS ,, HE has already made new friends and enjoys everything about the Club . Anyway I will try and upload some photos soon , have a wonderful weekend Maria UPDATE: 10-25-07 We believe and suspect that Sammy-Joe may have had a mini stroke , as his eating and swallowing has regressed , he now struggles again with certain foods, last week I have had the speech pathologist assess him and also have had the dietician come out this morning , both have come in to try and arrange what needs to be done , I know that Sammy-Joe would much rather eat things orally , rather than have things through the peg , just imagine how frustrated it makes him , and I am guessing that this also contributes to his behaviour . Life at home and in our community has been quite stressful lately , and all of us has had to cope with many issues , but I am most grateful to those who have been here ,,by ourside and on the phone , at the door , because when sometimes things seem like there is no Hope , there is always someone around the corner that lends a hand , and you find friends in the places that you didnt have friends , so its important to know that the way we treat people is what brings the positives back to us three fold , whenever you lend a hand ,, well then ten sets of hands come back to you when you need it ,, so please people , try and be positive , treat each other nicely and respect each others opinions , it doesnt take much to be nice and stay calm amongst the storm . Thank you to everyone that has been understanding towards our family this week and to everyone that has shown ,support , in everyway they can , I am extremely grateful to you all , I feel very very blessed having you in our life . UPDATE: 10-24-07 Sammy-Joe has had another stroke , and his swallowing and chewing has been affected again thank you for all your support Maria UPDATE: 10-11-07 Sammy-Joe isnt well again , his behaviour is telling me there is something else going on , he has regressed and has been doing things just like before he had the stroke , I am abit concerned , he has a blister on his lip and one on his neck , he has wanted to go outside in the mornings again but then is affected the whole day , he threw up this morning and also had a sore stomach from it ,, its so unfair , I am wishing pretty bad that something gets built outside for him to protect him from the light , but he still needs to run and excercise because our house is small there is no room for him to do this ,, he needs to run just like any other hormonal teenager , its getting difficult again because summer has set in Maria UPDATE: 9-26-07 Alot has happened lately in our lives , but I havent really had much chance to write an update , Sammy-Joe is finding his condition is frustrating now as the summer is setting in , he wants to have fun without feeling unwell all the time , he has been a little bored and annoyed at the lack of adventure , I am trying to get some time to get back on this computer , i WILL TRY AND UPDATE TONIGHT as I am not feeling too well still , also my mother inlaw is still in hospital and probably wont be coming out until Friday . Maria UPDATE: 8-18-07 please pray for my mother inlaw Pina , she has been rushed to hospital with a very bad lung infection , Sammy-Joe isnt well again and needs more prayers also , he hasnt been right for at least two weeks now. Maria UPDATE: 9-3-07 Sammy-Joe has been sick all day yesterday and today , had the doctor come out , he is very sick , he has the flu , i am not surprised as Joe and Christian have had the flu all week , Christian had week off school , is in bed still unwell . please pray for us UPDATE: 8-24-07 Today at the hospital I met a lovely Lady in the Car park that remembered us from an article that she had read on Sammy-Joe , she told us that reading about us inspired her to do things for her little Girl Kyia and she has set up a webpage , fundraised and helped change the quality of her daughters life by doing so , please if you are reading this please email me and let me know the webpage because I have searched and searched and am unable to find it I think you said it ended with it.net but I cannot find it ,, I would love to keep intouch with you . Sammy-Joe was seen by a lovely doctor today in the sleep Clinic , SAMMY-JOE was so well behaved today I am very impressed with his behaviour lately he is amazing . Maria UPDATE: 8-17-07 Sammy-Joe has been asleep for most of the day today and he isnt doing his best at the moment , it could be because he has lost his carer Christie today , he may seem that he doesnt understand but he does . I have also been told off a lot of late , it seems that my optimistic personality is bothering some people and the fact that I am over caring is sometimes a problem to them all , seems that everything I say or do is the wrong thing lately , even thou my intention is always to be loving and caring ,somehow things just get misinterpretted . I am grateful to all my friends that have continued to stick by us through thick and through thin and although you know I cannot pay you back with gifts and presents because of my financial situation , I am giving in many other ways , my house is open to all my friends and I am constantly trying to help in many ways with advice or with what ever I can offer , which at times is not much because of my difficult circumstances.My carer time has also been cut now and I only have limited time to do things whenever I have a carer , so most of the times I am busy now with Sammy-Joe . Well , as we start a new phase in our lives I am both excited and nervous to meet new carers , but I guess we will have to see what the good Lord has to offer us , I am praying everyday that Sammy-Joe continues to improve and and praying for all the other children in the world that have this illness , life is tough , but I have to move forward and cop everything on the chin ,that doesnt mean I am not allowed to cry or feel hurt when hurtful things are said to me , it is my right as a mother of a child with a chronic illness to feel things deeply and cope with the pain no matter how its delivered . Maria UPDATE: 5-28-07 Again I would like to appologise toeveryone that read s this journal for Lack of updates , I am sorry its taken me so long to write another entry . Its been pretty hard for me as I have had a lot on my plate to deal with . Sammy-Joe isnt well again , he has a lingering cold and I am sure he still has a UTI that he is dealing with , his behaviour hasnt been too bad but I can see that he isnt right , a mother knows these things , his sneezing is annoying him and he has been wanted to sleep a lot lately which to me a sign of him being unwell . Joe has been dealing with his depression and is looking much better lately he has been receiving some support from VERY SPECIAL KIDS and of course has been on medication for 10 days now ,but is looking heaps better and feeling much better , and I have received some support from Melbourne City Mission as we are still considered a family dealing with crisis . My parents are also receiving some support from the council workers and its been great to know that the DHS has also supported us with the fact that I am the main driver in a very hard situation so they are looking at trying to sort something out with the council for my parents . Christian has also been unwell at the moment suffering some headaches and migraines , he is doing well in basketball and we managed to get the team some good sponsorship for the year , so I am very proud of him right now . Well , I have also been a little down lately and havent really wated to write anything , usually writing makes me feel better but lately Ihave just wanted to rest whenever I have a free moment , I fall asleep as soon as myhead hits the pillow and this tells me I am tired , cos usually I have trouble sleeping . Sammy-Joe is back on the Melatonin which cost 96 dollars abottle of 50 ml , we couldnt beieve it , but it seems to be starting to kick in again . the bathroom modifications are finally going to start in June and this will be a great help as it will be much easier to shower Sammy-Joe soon . We still havent come any coser to making a decision about going to the USA as we are looking into it closer now and making some final decisions about whether to go in sept or feb 2008. thank you Maria UPDATE: 5-23-07 Sorry for the lack of updates , I have been so busy every single day ,I took my dad to his appointment yesterday at the hospital , left the house at 8 am got back at 1 pm ,Sammy-Joe was looking for me a lot , its been hard for him lately cause even thou he has carers he has been used to me being very involved with every single one of his needs , its been [retty hard for him to get used to me not eing here alot lately , I have many appointments for my dad to attend and being the only driver now I am the one that needs to take him , Joe has to work so its impossible for him to help me , but he does help me alot once he is home , his depression seems to be lifting with the help of the meds , so at least now he is actually functioning again in and around the house . Last night I dreamnt I was being attacked by crocodiles and woke up screaming , Sammy-Joe came in to see what was wrong with me at 3 am and we have been up ever since , it is now 6.46 am , I think my dream is pretty symolic to my situation right now ,where I feel like my life is out of control because of constant situations being thrown at me , but I think its a way of testing my strength , if I want so physically tired I think I could keep coping , but I am exhausted and need a break , unfortunately no chance of that , I need to be here for my family as they have so often been here for me . Life islike that you never know when its aboutto change foryou and this is when you can see how strong you truellyare and how strong your character is , I believe I am a strong person , but I am just tired . Ihave many decision s to make regarding the fund rasising now as I need to decide what is the priority for Sammy-Joe , should we stay here and continue to provide a good quality of life for the rest of his life as long as the money from the fundraising allows us to , or should we take him to The USA , where there is still no cure ,no change in treatment ,use up all the money that has been raised and then struggle to continue to raise money when we get back , I would still like to go.I know also how hard it is to keep raising money to cover all his every day expenses to give him a good quality of life here , the cost for Sammy-Joes health needs is enormous ,his personel needs , such as nappies , wipes ,meds and his creams , suncreams and protective clothing is enormous , the cost of extra therapy , and if I want to continue on with some sort of schooling next year ,because he is over 18 nothing is cvered by the education department ,, and then just us trying to keep the house mortgage repayments is enormous if we need to cover all of Sammy-Joes needs from our own very low income , its very very hard .Raising Money is very hard also . I know I have to stay positive and trust that things will work them selves out for us and the answers to all of this will come to us soon . On Sunday we had a visit from the TATE fAMILY , They have Madeline that has TTD also and they understand totally what we are going through , I will try and load the photos on to the page as soon as I get a chance , I would like to say Thank you so much to everyone , that prays , looks out for us and for everyone that checks in on the webpage ,please be sure to sign the guestbook and please know that I am grateful to you all . Maria UPDATE: 5-17-07 Sammy-Joe has been a bit of a superstar lately ,eating his spaghetti on his own and also twirling the fork like my mum taught him , he is so proud of himself and also he has been eating cheetohs , wow what a huge improvement on his behalf ,he has regained a significant amount of his abitily to chew and swallow although at times he still finds some foods hard , he doesnt want to use the food peg at all , he has been trying hard to just eat and although the majority of the time the food is soft food , its still great that he is just chewing and eating ,, big improvement on his behalf . Christian is doing well with basketball ,, all three teams . He is also doing well at school , he is trying very hard to improve in all areas and is making a conscious effort to stay positive . Joe too is trying hard , but is still suffering depression and is now on antidepressants , he is trying hard to beat this but obviously needs lots of time and TLC My dad is improving and is determined to get his life back after the stroke ,,, and me,,,,, well,,,, lets put it this way , I feel like I am looking after three generations right now ,because I have less support and more responsibilities , I need a bit of a break ,, but I guess God has other plans right now . I feel that everything happens for a reason and maybe these things happen to trial us ,,but I am just pretty tired right now . please pray for us Maria UPDATE: 5-12-07 I was so proud of Sammy-Joe today , we took Christian to school today and Christie also came along, then we went off to the hospital for our appointment with the Gastro team ,The doctor was so impressed with Sammy-Joe s behaviour , Sammy-Joe was so well behaved he waited patiently , I read him some books and then he watched a dvd while we waited for the doctor to see him , that was impressive , but what was more impressive was the fact that Sammy-Joe let the doctor examine him with no protest, he also asked if he could take the doctor home with him , it was so sad because this was our last visit with Doctor Alex as now , Sammy-Joe needs to be referred to an adult doctor , we then went to visit the starlight room , in the Starlight room Sammy-Joe wandered around making sure everything was still as we left it , he also wanted to go to the Craigieburn Library ,we were so happy and proud of him as he borrowed his books and videos , He was so proud of himself and like Christie said ""so he should be "" For Sammy-Joe to actually copewith doing all that in a day is very very impressive , we are classing this outing as one of our excursions , the BIST team and homeschooling team has been suggesting trying to get Sammy-Joe to the Library ,wow , how impressed are they going to be next tuesday that Sammy-Joe actually intiated it all himself , our next thing will be a visit to the Movies , we will have to work at getting him to go and thisis usually by encouraging him with theidea for about two weeks , this is what Christie and I did for the last two weeks about the Library and today he decided he wanted to go ,after two weeksof protesting andsaying ,,no no no , today he intiated it all on his own , we didnt even mention it at all . What a good day !!! please dont forget to sign the guestbook to let us know you have been here , we are grateful to you all that check in on us everyday ,it is wonderful and encouraging to us to know we have friends and people all over the world that care for us . Christian s team won tonight , tomorrow he has another game . My dad is improving slowly and things seem to be looking up , apart from me being very busy , I am actually looking after three generations , my children , my parents and my husband , Joe is suffering with depression and is trying to get through the best way he can , work seems to be a good distraction for him , it is understandable after everything we have been through for him to be feeling all of this sadness . I have been experiencing alot of stress headaches ,but I am hoping its just cos I am a little tired . please keep usin your prayers Maria UPDATE: 5-7-07 SammyJoe hasnt been well , he has had a UTI all week and is on antibiotics for it , he hasnt been well . have been very busy with both him and my dads needs , its been a pretty hard month for me , but I guess I am the strong one. Please pray for us and please pray for Brookes dad he is having surgery as we speak , I am so sorry its a very small update , but I havent had much time on the computer lately due to being so busy with everything else , my dad is getting therapy soon and Sammy-Joe too is getting OT once every two weeks , everything else has kept me busy , running around to doctors appointments for both Sammy-Joe and my dad , imbetween everything else . please sign the guest book to let me know you have been here Maria UPDATE: 5-1-07 It has been a busy day , so I must apologise for the short update ,Sammy-Joe isnt well , he is showing me signs of having another UTI so I am going to have to try and get a sample ASAP , In the mean time I have to also try and collect my DNA and Joes because the doctors at the NIH have requested it , they must be getting close to some sort of Answers with the genes , so hopefully this will one day help towards finding a cure . I know and suspect that it may notbe in Sammy-Joes life time , but at least Iknow that its because of Sammy-Joe that much awareness has been raised , I will always let his memory live on , till the very day that I am no longer here because Sammy-Joe to me has been the most inspiring person Ihave ever met ,he is truelly my hero , he is always smiling even when he is having the worst day possible Maria UPDATE: 4-19-07 April , this has probably been the toughest month in a long time , last year was hard with Sammy-Joe being so unwell and it was the beginning of a time when his symptoms were the worst for him , this time its bad because for the last four weeks we have had to deal with many changes , plus Sammy-Joe being unwell and also my dad havinghis stroke , life has been tough , so its only natural I guess for me to feel a little flat and sad , I had a big cry tonight because I foundoutmore bad news , Uncle Charlie is back in hospital and probably wont last the week , this wonderful man full oflife in thelast five months has gone from being a man full of life to a man that is withering away with Cancer ,life isnt fair and especially to his family, that loves him so much and now has to deal with saying goodbye, Joe went to see him tonight , but I couldnt go because I needed to be with Sammy-Joe , Joe and I had a cry when he got back from seeing him , its just not fair life is so hard especially when there is illness , please pray for Uncle Charlie and please continue to pray for my dad , please pray for Sammy=Joe , I pray my son has many more years with me , tonight I watched a show called House and in it was a story about a little girl allergic to light , I thought this to be a break through because at least the public will see that these illnesses truelly exist . all the things she went through reminded me of how much Sammy-Joe goes through , life has been hard on Sammy-Joe , life has been tough. Maria UPDATE: 4-9-07 This morning I received an SMS from Maria and I wanted to share it with you all on her behalf: Happy Easter! My Dad is home now. He is walking, talking, eating, laughing and happy to be alive. God has given him a second chance at life. There are still things he can't do but in time he will be able to again. * So from Sammy Joe, Maria, Joe, Christian and Family (Including me) have a wonderful and safe easter. Your all in our thoughts and our prayers, Brooke xxx P.S. Thanks everyone for all your support, love and prayers over another hard week UPDATE: 4-3-07 Hello, How are you? I hope this finds you well and happy. What have you been up too? It is Brooke here, putting this journal entry in on behalf of the Liistros. Maria's (Mum's) Dad is doing ok for day of surviving stroke. The doctors are retraining him to eat, walk, talk and to do things for himself. Maria wrote in her SMS, "I am very proud of him and love him very much. Sammy Joe must get his will and strength from my side of the family because my Dad is just as determined to improve as SJ is." So there's a little update for you and I reassure you I will keep you all posted as I get updates. A heartfelt thanks to all who have prayed and supported this adorable family as they face more adversity with such fighting determination and loving spirit. Please join me in continueing to support this family. - Brooke UPDATE: 3-29-07 Time to begin a new chapter in our life with more positive outcomes , this has been my motto today , I have decided that I am not going to let anyone upset me any more because only I know what it feels like in my shoes and I onlu know what it feels like to be determined to make things right for My son Sammy-Joe , I am grateful to every single person that has supported us and been with us every single step of the way and that includes to be with us here , reading this journal and signing the guestbook , attending events held for Sammy-Joe without question , being there to support him , loving him for who he is ,loving us for who we are as a family and just being with us every step of the way .Thankyou to you all , please be sure to sign the guest book this way we know you have been here to visit Sammy-Joe . We love you Maria UPDATE: 3-24-07 Sammy-Joe s behaviour is all over the place again and he was up all night long , very unsettled , he has been complaining of sore skin ,this is usually the result of the light exposure and when the sun hurts him it feels like one million pins are pinching his skin , he keeps telling me to scratch his skin for him . Today Christian has another basketball game , lasts night game , they played well against Sunbury . but lost , although I think they couldve won at one stage because they were doing a great job keeping up with them . I will let you know how todays game goes and also I will try and take some photos of the boys . Maria UPDATE: 3-14-07 Sammy-Joe is having a hard time ,he has been so moody and frustrated and angry lately. Maria UPDATE: 2-17-07 Sammy-Joe was such a star yesterday at the hospital , he had a blood test with Andy his usual , fantastic pathologist , and blood taker , Andy is so great with him , it makes life so much easier for us because Sammy-Joe knows him and trusts him and will just roll up his sleave for him and say ""DO IT JUST TAKE IT "" and then he starts counting , he even had it done this time with no Angel Cream , I was so worried he was going to play up , but Sammy-Joe didnt , he was amazing !! We also went to see the Gastro doc , and he said that Sammy-Joes button needs to be replaced so he will go in for Day surgery again around the end of March , and then we went to see the sleep clinic people , they suggested that Sammy-Joe start a natural hormone called Melatonin , which is a thing that we normally get from the sun , our brain naturally releases it and this is what helps us to sleep , but because Sammy-Joe doesnt get any sun , this is why his sleeping pattern is all over the place , this is going to be expensive because it isnt available here over the counter , like it is in the USA , they said they will organise for Sammy-Joe to have some , so we are hoping to get it by next week . Now I WISH I was back in the USA so I could get this for him , its so complicated here , I cant understand why its so difficult at times and so expensive for our children to get what they really need . Parents that have sick children constantly worry about whether their children will survive through their illness , but we also have to worry financially and whether we will be able to continue to support our children through their survival , its just so wrong isnt it ,, anyway , I know that somehow God will help us through this difficult time , and I am so grateful for all the help I have recieved so far , I am grateful that there are generous loving and caring people all over the world that have thought of us ,, thank you thank you thank you , without your support we would not be here today . Yesterday was so good , we took Brian along with us to the hospital , it really helps to have the carers come with me , because this way I can speak to the doctors and they can entertain Sammy-Joe , and also its always good to have some company , its pretty much a tiring day whenever we go to the hospital , and by the time you get through all the appointments , you just end up dragging yourself , plus Sammy-Joe all over the place because you get pretty exhausted , what makes it easier is if Sammy-Joe is happy , and yesterday he was happy , he wasnt really the calmest because i think he was pretty anxious to begin with , but then he calmed down by the end of it. When we got home he wanted to tell my mum all about it and it was so funny when he was explaining his day to her , we just had to laugh ,, he just kept saying ""AND THEN I HAD TO HAVE ANOTHER BLOOD TEST --GEESH TOO MUCH BLOOD --SICK OF IT -- SICK OF COUNTING -- TOO MANY TIMES -- I AM A BRAVE BOY -- I AM A STRONG BOY"" he was so funny .anyway here are some photos I wanted to share with you all please have a great weekend . love and hugs Maria UPDATE: 2-12-07 Sorry for the lack of updates , i havent had much time on the computer lately , Sammy-Joe hasnt been too well lately and yesterday Christie and I took Sammy-Joe to his doctor , she gave him more antibiotics and also some new cream for his button , as its infected again ,, I am so tired and sorry for Sammy-Joe , he has been going through so much lately and although he continues to stay positive , declaring in a loud voice ""I AM WELL"" I know rhat he is struggling with this bard button , he tries so hard to avoid going to the doctors , but unfornately we needed to go , and also we will be heading to the hospital on Friday to see the sleep therapy people and also his Gastro doctor and the stomal therapist , so many hospital appointments , we also have to get a blood test also , Maria UPDATE: 2-8-07 Sammy-Joe finally went to sleep this morning at 4, 30 am and then woke up at 8 am , after Christian set off to school with his nonno , Sammy-Joe decided he wanted to venture outside in the back yard , the UV was still on zero at this stage so he felt very comfortable indeed , around 9 am he decided he wanted to have breakfast as Nonna s house , something we used to do in the past , since his regression he hasnt felt well enough to want to do this so its been almost a year since this has happened . He was so happy to sit in the car while we drove around to my mums , my mum and dad were equally surprised to see us turn up at their doorstep , we were all pretty impressed with this , to some it may be something minor , but to us its a big deal , he hasnt wanted to do this for a long time , he even asked for Eggs , which I was a little worried to give him , but he managed them slowly , he was very proud of himself . I opted for a strong black italian coffee as I am still functioning on less than 3 hours sleep a day .I was so excited about this morning I just had to write it in my journal , its been such a hard long trott for us lately , and I was hoping that soon Sammy-Joe would want to stay awake more during the day , I believe once the cooler weather sets in he will start to do this . Summer is so hard for us .To ponder on what the future holds for us and for us as a family is something I have learnt not to do , I have decided to live each day precious in the moment , and todays events will be one of those precious moments I will remember for a long time , my parents joyful faces as they opened the door to Sammy-Joe standing there , was so wonderful and so memorable , their laughter and surprise when he wanted to eat eggs , these are precious times for us and I really dont think anyone can truelly understand how wonderful it is to see Sammy-Joe have the slightest improve , its something so rewarding words cannot even describe the feeling . yesterday Sammy-Joe counted to 20 , boy were we excited about that also , something that he hasnt done also for the longest time , he has changed in many ways in the last few weeks , sometimes I am frightened about this because in the past he has always shone brighter before some bout of long illness , please pray that the positives keep happening , God knows we need them to. As Sammy-Joe approaches adulthood , our concerns grow , we worry more about the shortened lifespan , we worry more about time , something he is also doing as he is starting to collect clocks , he keeps saying he needs more time , I am not too sure why , but its something that has been happening for the last two weeks , ""More time ,, more clocks "" he says , especially around 3 am each morning . How robbed my beautiful boy has been of basic human functions and of a human being , how robbed he has been many times with his life , I have learnt to appreciate the small things , the small achievements seem huge to me , and I have also learnt to appreciate and notice small kindnesses , compassionate people , my life is rich with experiences , I rejoice everyday in all the tiny steps , in loving faithful friends , in kindness of strangers , in time spent with Sammy-Joe , in those moments of solitude , when we just sit and hold each other , when he just wants to be held and tells me time and time again ''I love you mummy , I love you with the whole wide world "" these are the moments I rejoice in , these are the moments that will live in my heart forever . the moments when my son Christian says to me ""Mum No one can make me laugh more , cry more , fight more and love more than Sammy-Joe can ."" these are the moments I will cherish forever . Today my pain sits outwardly , today my pain is sitting on my sleeve and so is my heart . Maria UPDATE: 2-5-07 Just wanted to say Happy Birthday to Carol for Saturday and Happy Birthday to Sam for Sunday Hope the day was beautiful for you. Still havent had much sleep as Sammy-Joe still continues to sleep most of the day and is up all night long into the early hours of the morning , I am still going on less than three hours of sleep a day . I NEED prayers , please pray that Sammy-Joe soon starts to go back to sleeping at night , I know the summer does this to him , but I think this year its gotten worse . Well i wont be online for a few days as our computer is getting serviced and so please do remember to visit all of our friends and pray for them and also pray for Uncle Charlie and Uncle Nick , both going through cancer treatment at the moment . please sign our guestbook this way I know you have been here , love and hugs across the Globe , reaching you as light through your heart , love and hugs ps had the locum doctor come out to visit Sammy-Joe as he is unwell with a temp and an infection in his bard button again , he also has a sore throut , so he is on antibiotics again and also some cream for his button . he stayed up all night long , so I BATHED HIM AT 2 AM this morning and then he watched some shows on Tv . he is so funny , I love his gorgeous smile .... Maria UPDATE: 1-22-07 Sammy-Joe spent most of Saturday fighting a low grade fever , he also complained of sore ears and a sore head , I gave him panadol every four hours and that kept the fever low , he slept most of saturday and sunday , then spending the early hours of the morning up playing some games on the computer , the good news is he is feeling happier to sleep in in his carbed now, which means he doesnt want to spend much time in my bed anymore ,, yippee Joe and I finally get our bed back , after a very long time ,, so hopefully this is another improvement in Sammy-Joe , another step forward , cannot wait for homeschooling to start am very excited about it all Maria UPDATE: 1-19-07 Sammy-Joes bard button area is infected again , it is red and sore and he has been sleeping his days away for the last couple of days , which means I have had less than six hours sleep in two days as Sammy-Joe is up most of the night , I have to try and get some day sleep , but this too is impossible as Christian is home , and I need to be awake for him , all of his friends have gone away for the break and although he has had offers , he hasnt wanted to leave us for a break , he still enjoys being around us and isnt at the stage of wanting to try and get away from us like most teenagers do these days , I guess this will probably happen in the next few months as he is definately a true teenager . Sammy-Joe on the other hand has truelly shown us that he is definately a moonchild , sleeps all day and up all night playing , he plays outside hunting for bugs and also looking for the long neck turtles in our garden , he has named them ROCKY AND SHELBY , the other night he also mentioned that he saw a snake , which freaked me right out because last time he actually said that , there really was a Tiger snake in our garden , a momma snake and her baby , pretty scarey stuff !!!especially because they can be deadly if you get bitten , so I have been thinking of calling the Ranger today to see if he can find anything . THANK GOODNESS ITS RAINING ,,YIPPEEEE!!! UPDATE: 1-17-07 Please please pray for all the Children in the world that a battling some kind of illness , their days are filled with hospital appointments , doctors , medical bills and many many days in bed . Please please pray for Sammy-Joe that is having a hard time through these very hot days lately , he has been sleeping for most of the days , but is struggling with his tummy at the moment . Thank you for visiting us maria UPDATE: 1-1-07 Sammy-Joe has had a terrible week , he has been so sick and been very irritable , his peg site is all mucky and infected again , I had to get the locum doctor to come over and see him ,because I thought I was going to have to take him to the emergency part of the hospital , the locum said keep an eye on it if it starts to bleed then take him , yesterday he had some bleeding , I called another doctor and now he is on antibiotics for the site and some ointment , well he seemed to improve almost immediately , so hopefully these will help him , he has been so sick for about six weeks on and off , its driving him a little insane also , he keeps telling me ""IM SICK IM SICK "" and he truelly is , he has had some roaring tempretures the last few days , but I was trying so hard to keep in out of hospital ,giving him panadol every four hours , I was starting to believe we were going to start the new year in hospital ,, please please pray because I feel that we still may end up there , Sammy-Joe seems to be going down hill pretty quickly lately ,, I have been praying so hard lately . Sammy-Joes carers are also very concerned as they have commented on how unwell he has been lately . Yesterday I was so heartbroken , my friend Julie ,, Collins mum, emailed me to let me know that Tina s boy Lance passed away in his mothers arms , I was so heartbroken and sobbed for most of the morning , my cousin Carmen came over and she asked me ,out of concern for me, how I feel about that and have I thought about it for our future , I told her I am going to need people to pull me out of the darkest hour of my life when it does happen, because I cannot imagine my life without Sammy-Joe in it , this is all I know and what I HAVE been doing for the last 18 years , everything I do is for my children , I told her that Christian will probably be the only one that can pull me through it , he will have to reach to me and pull me out , because the pain is too hard to bare, to carry , to hold , please pray for Tina because my heart is broken with the news of Lance s passing , Tinas heart is my heart and every mothers heart that has a child that they adore, love , nurture , we are all mothers and we know that the pain of losing a child is the worst pain you could ever experience . It is unimaginable , ADDED:7-03-06 Condition: Trichothiodystrophy , photosensitive to light and Neurodegenerate illness Comment This is a life threatening illness and lifespan is short , Sammy-Joe is the eldest survivor of this illness to date.