Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Amber 8 years old. UPDATE: 1-19-09 Hi, I know I am usually on here about my Amber but not today. Today I am in need of prayers for a very special boy. I have known this family for about 14 years now and there are two children, one girl (Maren) and one boy (Michael) who have been raised by their father alone. I am not blood related but they call me Aunt Chell because I am so close to them. I consider them my own children. The girl has been best friends with one of my girls since they were 3 years old and now they are 17, that should tell you how close we all are. I wanted to let you know a bit about them first. To know them is to love them. So let me tell you a little about Michael. Micheal is one of those children that makes you light up when he comes around. He is always trying to make you happy, he loves life. Micheal has always had some health problems, he has noonans syndrome, so he has always been so tiny even though he is 15 years old. But no matter what he was the child that wanted to do everything and prove everyone wrong and show them that he could do it no matter what. We have always been so proud of him. So today, I am requesting prayers for him. Yesterday while outside playing with his cousins he fell and has internal bleeding. They haven't been able to do the surgery that is needed as of yet. They gave him 3 pints of blood last night. They are unable to give him anything for pain due to his blood pressure not regulating. So please lift this child up to God and pray for him and for the doctors that are caring for him that they might be able to do everything they can for him. Please pray for his family that they can be strong and be there for him. Thank you so much, MaChelle' & Amber UPDATE: 12-27-07 Amber is doing great!! We went to the neurologist last month and she said that Amber is doing wonderful! She hasn't had a seizure in almost a year!! This is very good news for us. Her learning is going real slow but she is trying to keep up. She just turned 14 years old in October. It's hard to believe that over 6 years ago they gave her a year to live and look at her now. She is a beautiful teenager (and yes she has the attitude to prove it lol). The power of prayer keeps her going and all the miracles I could of ever asked for. When they diagnosed her with this disease and told me everything that could happen to her, I thought she was lost forever. But GOD restored my faith and has left her here with me longer than the doctors ever imagined. I pray that she is here for many more years, but I know that she is in GOD'S hands and only HE knows what HIS plan is for her. So I take every day, every hour, every minute I can possibly have with her and enjoy her and show her all the love I can possibly give her and I help her LIVE a life of fun and happiness!! Thank you and everyone for your continued prayers and support for my sweet Amber! Love, MaChelle' UPDATE: 12-6-06 Amber is doing great! No seizures since the one in September! Other than a typical cold she is doing good. She is having some trouble in school but her teachers are wonderful and very supportive. They have been a Godsend to us. I don't know what we will do without them when she goes to her new school next fall. She is 13 now and she amazes me everyday. Four years now since they gave her a year to live and I treasure each day with her and pray that GOD lets me keep her longer. I watch her learn new things, dance each dance, laugh, cry, and smile and still I can't believe that this now teenager of mine has so many problems. We have been blessed so far that it isn't worse than it already is. I know GOD is watching over her and taking care of her even though she is here with me instead of with HIM, and that alone brings me comfort. I know someday (hopefully many years from now) that she will go home to HIM, but for now, each day I get to spend with her is more special than the day before. Amber and myself wish everyone a very Merry Christmas and Happy New Year and pray that all your dreams come true and that all your prayers are answered! MaChelle' UPDATE: 9-22-06 Amber had been doing really well over the past year. No set backs or seizures or anything. Her learning in school was going wonderful, the teachers and everyone at her school have been so proud of the way she has been learning and growing and trying to overcome everything they said she couldn't do. She got 2 A's, 1 B, and 1 C on her progress report and she was so happy and I was ecstatic. But then a major set back happened... Amber had a seizure yesterday that was pretty bad. They don't know what caused it or why it happened because none of the things that cause them was going on with her. We had to go through a bunch of tests yesterday. They don't know if it caused damage to her or not. They told me that all the bad stuff with her disease will probably start happening when she reaches puberty and now that she has, I am so scared.  We are waiting on tests results and for the doctors to figure something out for her. Please continue to pray for my baby girl.   MaChelle' UPDATE: 5-25-06 Thank you. I also  would like to give an update on Amber.   Amber is doing great. This is her last week in school and she has made A's & B's this year. She is still in s pecial education, but she is reading now and doing pretty good. We just had our dance recital and she was so beautiful in it. Amber and I danced a duet to.. "Streets of Heaven" and we had everyone crying and in the end myself and Amber were crying but it was so beautiful to dance with her and watch how she has grown and changed. I am amazed everyday by her. Thank you all for your continued prayers for her.   MaChelle' UPDATE: 1-23-06 Hi there, just a little update on Amber...   We went to the doctor friday and got good and bad news. good... no tumors in her eyes. bad.. her head is a little larger, her bones in her arms and legs aren't growing the right way. over the next year will be a test of time cause she is starting puberty and that is when some if not all of the damage will be caused. Her doctor that we loved and gave us any hope retired and now we have a new one. He seems okay so far. He was very thorough with her and he tried to explain everything to us. But it is still scary, it seems like every visit we get more upsetting news. But I keep praying and hoping for a cure.   Well, I am going to go for now. Talk to you soon.   MaChelle' & Amber UPDATE: 9-21-05 Amber 11 Years old.           Amber March of 2005 This is Amber's brother and sisters.... back row... Sarah & Rabeccah front row... David & Lorah & Amber these were taken sept of 2004 I have just been hit with Hurricane Katrina but I am going to send an "In Honor of" donation. I hope all is well with you and that things are looking up for you. Amber is doing pretty good. The doctors let her go back to public school and she is loving it. She is in a small special education classroom that works on her learning level. As far as her doctor visits, not sure what to do with that because all her doctors were at Children's Hospital in New Orleans. So hopefully things will get back to kinda normal so she can see her doctors. One doctor that came in to help with the hurricane told me that right now my best bet is to go to Houston, Tx. with her so that definately didn't make me feel any better. And now we have Hurricane Rita coming either here or Texas so it's just a sit and wait thing right now. But so far she is doing good and that is what counts. Well, I need to run. Take care and talk to you soon. MaChelle' & Amber UPDATE: 7-8-05   She is doing pretty good for now. She gave us a big scare the last week of may. She has always had the silent seizures but on May 26th she had a full blown seizure, worse than the one she had before. The first one she had all that happened  was that she shook just a little bit, but this one took her down, I had to grab ahold of her to keep her from falling and hitting her head on the concrete because we were outside when it happened. It was really scary and her doctors are keeping a closer eye on her. They changed her medication again to a bigger dosage and so far it seems to be working. Amber and I had kinda put her medical condition in the back of our minds to stay sane and the seizure brought all the horror back that we were trying to get past. So now my baby girl is hating her disease and her brain again and saying it's not fair and I am lost as to how to make her feel better. It seems like when we think we get over one hurdle another rears it's ugly head. As much as I have read up on her disease and on seizures and read about other children who are worse off than Amber is I wonder how parents get through this. I know that prayers is definately one way, but how do you look into your childs eyes when she is crying and asking you if she is going to die? I have never lied to Amber about her disease and what it can cause and I am not going to start now but it kills me to look into her beautiful face and wonder how to correctly answer that question. But I have finally been able to answer that question for her and the only thing I can tell her is that she is in God's hands and it is all up to him as to what his plan for her is. She accepts that for her ability and tells me she is going to be with me forever and that definately puts a smile on my face. As far as her schooling she is still doing what she can. The school board here won't do what the doctors request for her, so I am checking into moving her to a new school district so maybe she can go back to school in the fall instead of the hospital/homebound program she is on. She is reading a bit better now though and writing better too. But as of now she is doing okay, her doctors even let her go on a 3 day vacation with her grandparents to the beach. They have to keep the sunglasses on her and not let her get too hot (because that is what triggered the seizure in May), but she is getting to do some things again. One of her doctors has said she has gotten worse in some of her learing aspects and he even told me to start thinking about a second alternative for when she gets grown for living arrangements  for when I'm not around anymore and that is something I don't even want to think about right now. I don't want to ever have to put her in one of those homes I have heard about. I have 4 other children that are all older than her and they all say they will take care of her so that makes me feel better. She is now 11 1/2 years old and she still has the mind of a 4 year old and the doctor says that will probably always be that way. Maybe medically that is what the tests show but to watch this sweet little girl, she is so much smarter, she may not be book smart, but she is definately smarter where other things are concerned. She is learning how to cook some things now. Just little things, but to her it is the biggest things in the world. We have to go back to all her doctors again starting next month so I will let you know what they say after we see them all.   You don't need to put all that on her page. You can make it shorter if you would like. Thank you for your continued support and prayers.   MaChelle' UPDATE: 10-26-04 Hi there! Just a little note to say hi and to say thank you for Amber's birthday card. She turned 11 today and she just finished opening all her presents. She is doing good, waiting to go do more tests. Will let you know when we get them done and the results. UPDATE: 5-12-04 Hi there! Thank you for your continued prayers for my little Amber. We finally have some good news. Her medicine that they have put her on for her seizures is starting to work. We are so excited about this. They are even talking about letting her go back to school next year, we can't wait to see what they say over the summer. She is doing really well right now and we couldn't be happier. She says to tell you hello and sends lots of hugs and kisses. We go back to the doctor in June so we will see what that brings and we will let you know. Thank you again for everything. MaChelle' & Amber UPDATE: 11-17-03 Amber is doing pretty good so far. Her seizures have gotten worse and the medicine isn't helping as of yet. She was allergic to the first two medicines and now she is on a new kind. So hopefully this will help her. Her schooling is going okay, she has finally learned to read a little bit. We just continue to pray for her and hope for the best. Please thank everyone for their continued prayers and support. UPDATE: 9-11-03 She is doing pretty good as far as everything goes. They have diagnosed her with mild mental retardation. Her MRI on her spine came back great, no tumors. But the MRI on her brain wasn't so good. The easiest way to describe what is going on with her brain is to say that her brain is disintegrating or turning mushy is how the doctor explained it to me. He drew me a picture and showed me that her brain is lower in her head than a normal child, it is really hard to explain without drawing a picture. She can't get hit in the head or the neck, she can't fall and hit her head or any type of injury to the head or neck because it will either paralyze her or kill her. I keep saying I'm going to put pillows all over her and my house so she stays safe but what kind of life is that for a child. Her seizures have gotten worse, they say she now has what they call light enduced epilepsy. Her doctor tries to put everything in my terms instead of medical terms so I can understand it. They are doing everything they possible can but there is still no cure. She is allergic to the seizure medication so we had to stop that. We will be starting a new medication this week though, so hopefully that will help with her seizures. I will keep in touch as new things happen. Thank you for your continued prayers for her. MaChelle' UPDATE: 4-16-03 Hi, Just wanted to give you an update on Amber. She has been doing pretty good lately. Still having her headaches pretty regular. She has now had her first seizure that wasn't a silent one. I actually saw this one and it scared me to death. On a good note though, she got to go to her first dance competition this past weekend and she got every step and didn't forget any of her dance. Her group took 2nd place. I was so proud of her and so excited for her. Her doctors say that dance is good for her, I will keep you posted as soon as I know more test results on her. Thank you for your continued support and prayers. MaChelle' UPDATE: 2-01-03 Hi there! Amber is doing good, no problems as of lately. Other than her headaches that she gets she is doing rather well. We go back to her geneticist on February 12, so I will have more information then. She has her good days and her bad ones, more good than bad right now though. So that is a good note. My brother and his family came from Texas and prayed over her and that was very heartfelt and very special. I got goosebumps and started crying while he was praying, it was like God was right there with us with His own hands on her. I know God is with Amber everyday, and He hears our prayers, but this one day that my brother was praying over her, I could feel God's presence with us. It was such a wonderful feeling I can't even express the emotions and feelings that we all felt that day. The power of prayer is a wonderful thing, and I thank everyone that prays for Amber and that has and is still standing by us and praying for her. It has been a tremendous feeling to know that so many people care and so many people that don't even know us personally continue to pray and support my baby girl, it means so much. Thank you. Sincerely, MaChelle' UPDATE: 12-19-02 We had Amber's second EEG done yesterday. When she had her first one it confirmed her silent seizures every 5 to 10 minutes, and they told us not to let her be around strobe lights or ride in a car without sunglasses on. Yesterdays proved some of my worst fears, she has gotten worse. Her seizures are still 5 to 10 minutes apart, but they are getting stronger, and it will only be a matter of time before she has a full blown one. Her brain with the seizures is shutting down more and more. The doctor said to definitely keep her away from all strobe lights, and she isn't to walk out my front door without sunglasses on even when the sun isn't shining. He also told me not to let her look at Christmas lights that blink, because they are sending her into a seizure. She also goes into seizures when she has an asthma attack, and when she laughs to hard. How can you tell a child that loves to look at Christmas lights not to look, how can you make your child not laugh to hard? Amber is a child that loves to laugh and make you laugh. But Amber's little brain has a hard time dealing with excitement, or flickering lights, and things like that. We did change all our blinking lights to non blinking lights last night, but as far as her laughing I refuse not to let her laugh because that is what makes her the sweet child she is. She loves to be happy, she loves to smile, and she loves to laugh. The doctor says the seizures are taking a toll on her brain, but he told me to keep her as happy and as active as I possibly can to let her have the most normal life that she can have. Now is when some people would give up on prayers but we will continue to pray harder even now because there has to be something that can help her. I will continue to pray for a miracle, and continue to hope that the doctors can find something to help her get well. Thank you again for your prayers and support through this terrible time of my little girl's life. With love, MaChelle' UPDATE: 12-17-02 Hi all! Amber is over her cold now. She is feeling much better. She goes for her EEG this week. I will let you know the results as soon as I have them. We are getting ready for Christmas, this year has changed us all especially with the holidays, but to watch our little Amber's face as she helped hang each ornament on the tree and put up decorations outside is more special than ever. I silently wonder to myself, will I get to see this next year. Today was a bad day, the schoolboard has finally finished her evaluation, and we did her IEP today and went over her testing. I have always known that Amber was a slow learner and had trouble learning and every 3 years when they do her evaluations she was falling farther behind. When she was 3 she was 1 1/2 years behind, when she was 6 she was 2 years behind, and that wasn't too bad. But now that she is 9 she is 4-5 years behind. They are all thinking that because of her seizures coming so quickly it is causing her brain to shut down more and more. Most of her testing was on a 4 to 5 year old age level, and a lot of it was Pre-K learning abilities. I don't know what to do, I am so scared. My baby girl is falling farther and farther behind and I don't know how to help her. I wish someone could just pinch me and wake me up from this nightmare and nothing would be wrong with my baby girl, but I know it isn't a dream, and I know that my baby is getting worse. As I sit here and think about it, I cry more and more, and wonder, where is my little girl going to be in another year. I just can't even imagine her not functioning at all and that is what it is slowly coming to. How can there be a disease that can cause so much damage to a beautiful vibrant little girl and why can't anyone make her better? Everyone says that God doesn't put more on you than you can handle, but I really don't think I can handle much more. Oh how I wish I knew what to do or how to help my baby girl. I will continue praying and hoping for a miracle because I know somehow there will be a miracle for her, there has just gotta be one. Thank you again for your continued support and prayers. Thank you also for her Christmas present, I let her open it early, she was so excited about it, I just couldn't keep it from her. Her face lit up so when she opened it. She loved it. She can't read well but she tries really hard to read the words that she can in it and I help her with the rest. Thank you again, she loved it. MaChelle' UPDATE: 12-04-02 Hi there. Amber has a cold right now but other than that she is doing good. She was tested for scoliosis and it was negative so that was a good thing. She starts a whole new series of testing this month. So we are waiting on that. Her birthday is October 25th. She just turned 9 years old. Thank you so much for your prayers. It means so much to us. I will keep you updated as soon as any more test results come in. MaChelle' UPDATE: 8-08-02 Thank you so much for your prayers and thoughts, you just don't know what it means to me. It is helping me a lot. Amber went to one of the top NF doctors here today and he was very delightful. He answered a lot of questions I had and some I hadn't asked yet. Amber is doing OK so far. She is getting headaches a lot and the doctor wants me to take her back to her neurologist for that. He tested her for scoliosis today (waiting for results) She has to go see a bone specialist and an eye doctor for more tests. He also is sending her to a physiologist for an evaluation, and he told me that he would fight with my school board here to get her the help she needs, if they won't do what I ask of them. So today, I didn't cry and it was a good day. We have to go back in a month so he can tell me all the test results. So hopefully I will have good news for you the next time. I will keep you posted on the test results as they come in. I have faith that God will come thru for my baby girl. We still have a long way to go and a lot more testing to do, but I believe there is a miracle out there for Amber. So I will keep praying and believing that God will take care of her. MaChelle' Added: 7-12-02 8 Years Old Hi my name is Amber. I am eight years old and the youngest of five children. I am the baby of the family and I love to make people laugh especially when they are mad or sad. I was the sick one of all my mom's babies. I have severe asthma and I have to take lots of medicine and I get sick really easily. I couldn't walk until I was 18 months old and couldn't talk until I was a little over 3 years old. Mom and Dad have done a lot for me to help me catch up with the other kids my age. I have been in school for 7 years now due to me being ill and not being able to talk or use my gross motor skills very well. Mom knows what that means, I don't. I don't have a lot of strength in my hands but we are working on it. I get stronger everyday. I love to cheerlead, and I am still taking dance. It helps me a lot, kind of a physical therapy for me for my motor skills. I love my teacher, she is so funny, and sweet. I like to watch Teletubbies, Barney, and my favorite is Winnie the Pooh. I have now been diagnosed with Neurofibromatosis. I don't know what that means but mom and dad do. (From Mom...) NF-1 is a disease that causes tumors on the brain, spinal cord, nerves, and all over the body. This is really scary for us all. She is a very happy child and doesn't complain about much. She is having silent seizures, pain in her legs, headaches. She also has 47 birthmarks as of 7/2/02. Considering she only had 1 when she was born and had 5 when she went to the doctor 3 months ago. You can look this disease up on the internet and look under the Neurofibromatosis Foundation Website and they have lots of information there. I don't know where we stand with my baby girl, she is in God's Hands now. Only He can determine her outlook and her life. This disease is by far scarier than anything we have ever dealt with concerning her or any of our children, because there is no cure for this disease. But please know that it is not the Elephant Man disease, they are two separate things. Our baby girl fights for her life everyday. With the seizures the doctors say it's not good. The only thing left to help my baby girl is a miracle and I believe in the power of prayer. Only God knows how long we are on this earth and I just pray that Amber is here for a very long time. I know our children are only on loan to us from God, until he is ready for them to come back home. But I can't imagine our lives without her. So I will continue to pray and continue to hope for a miracle. There is no cure for this disease, and Amber doesn't know all the things that can and probably will happen to her by the time she is a teenager. Some of the doctor's and I don't see eye to eye about her but I keep taking her in hopes there is something they can do for her. I will go to the ends of the earth to help my little girl. Along with NF-1 comes learning disabilities and Amber is almost 9 with a 3 to 4 year old age learning ability. They say that she has to tell you or show you in order for her to learn, because by the time she tries to get it off the blackboard to her paper she forgets it. She is now homebound due to her seizures and due to her legs going out from underneath her at any given moment. This disease can paralyze her and they have already started doing tests to see what damage has been done. So for now, we live everyday to the fullest, and make her as happy as we can. And we do alot of praying. A Silent Prayer There is an illness That's really bad It takes the life That children once had It's silent and sneaky and sometimes hard to see Yet it takes children away from you and me There's not yet a cure So mom's and dad's are not sure Will it be today It's hard to say The doctor's work real hard From daylight to dark To find a way to stop this From leaving such a painful mark So we come to dear Lord We parents world wide To ask for the strength As we loose our foolish pride We come to You and Pray With tears in our eyes Please help us get through this With our babies still alive By: Willis Bennett Father of Amber Bennett... Diagnosed with Neurofibromatosis on May 9, 2002 Neurofibromatosis Keep praying that there might be a cure for this deadly disease. What is Neurofibromatosis (NF)? NF is a disease of the nervous system (brain, spine, and all the other nerves). It can cause tumors to grow on nerves and produce other abnormalities such as skin changes and bone deformities. NF is NOT contagious; the person is just born with it. NF occurs in both sexes and in all races and ethnic groups. Scientists have classified the disorders as neurofibromatosis type 1 (NF1) and neurofibromatosis type 2 (NF2). How does the doctor know/diagnose it's Neurofibromatosis (NF)? The doctor checks to see if the person has two or more of the following signs or symptoms of the disease. Five or more odd-shaped light brown skin spots ("café-au-lait macules") the size of a dime or larger in kids. Two or more tumors growing on a nerve or nerve tissue or one tumor involving many nerves (neurofibromas); Lots of freckles in the armpit or groin areas; Non-tumorous growths on the iris of the eye (Lisch nodules); A tumor on the optic nerve (optic glioma); Severe curvature of the spine (scoliosis); Certain bones other than the spine being enlarged or deformed; and A parent, brother, sister, or child with NF1 What can be done to treat Neurofibromatosis (NF)? Scientists continue to research ways to stop NF, but right now, the disease is incurable. Doctors can only treat the symptoms. Surgery is often necessary to remove dangerous and painful tumors or to correct bone deformities. If you would like to add a page for your child, click on "Add A Child" below. Please be aware that once a child's page is added to this website the information becomes public. Please keep this in mind when posting information. It is recommended that you DO NOT post your full names or addresses unless using a post office box. We can not be responsible for who views these pages as they are open to the general public. We suggest a password protected page for optimum privacy. Need information? Contact: Elizabeth Ricard, President Children of the Promise, Inc. 405 Shady Pine Lane Newcomb, TN 37819 866-565-KIDS president@childrenofpromise.net JOIN FOR DAILY UPDATES Please join thousands of prayer warriors around the world as we pray for our children. 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