Michael was born 4lbs4oz full term. He was a small baby and there were no ansers as to why he was so small. His mother did everything by the book when she was pregnant. Michael wouldn't drink much of mommys milk and they started supplementing him with milk formula. Michael was red and swollen with droopy eyes. He was crying every hour of every day. He was arching his back in pain. Michael also had projectile vomiting and severe diarrhea.
A week before Christmas when he was 2.5 months old he had blood pour out of his mouth, he had actually cried so much that he broke a blood vessel in his throat. The doctor said that he was allergic to breast milk and milk based formula, and to switch him to a formula that's called Nutramigen. He proved to also allergic to that. Then the family found a miracle he could tolerate and thrive on neocate infant amino acid based medical formula. They were to start trialing foods one at a time just like with every infant. They started with rice cereal and the doctor said to mix it in his bottle to keep his tummy full longer, she assured Jennifer no one can be allergic to rice. Michael is very reactive to rice, he started to go down hill and deteriorate so his mommy and daddy pulled the rice. Then they were on to squash, sweet potatoes, peas, carrots, etc. Michaels body also rejected those foods, but they were determined to find him something. After years of trying they decided to do what's called gut rest. They didn't want him to be in pain because of food so we allowed his body to just have neocate junior unflavored.
During this time in life everyone was happy and Michael was as healthy as he had ever been. No more vomiting, no more bloody stools, no more swollen body, no more mental changes. Then out of no where he started reacting to that. They were lucky that they had old label neocate still in their house. Mommy and daddy took donations from all friends and family to be able to stock pile this safe food for Michael. The company claimed that there had been no change in their product so they cant change back because they never changed first. After several months and several news stories and begging the company fixed their product. Through this time frame Michael and parents went to the Mayo Clinic in Minnesota for two weeks. They took a three day drive up and stayed in a little appartment during all of his testing and appointments, and then drove three days to come home. During this time Michaels doctors there took some very important blood work and spinal fluid to sent it off for whole genome testing. It turns out Michael has two very rare genes that his parents carried with no knowledge that caused Michael to have a disease referred to as: Mitochondrial disease (Mitochondrial depletion syndrome 4b, also known as Mitochondrial Neurogastrointestinal Encephalomyopathy).
Michaels mother also connected with a group of moms and through them she found a certain brand of hemp hearts that Michael tolerates well, to be his protein source. Mommy then found a safe sugar (simple carbohydrate source) the family has since found safe blueberries, apples, carrots and safe kale. Through hours and days of research mommy found out that Michael has hope with a bone marrow transplant. Michael went to the doctor and the doctor agreed, so he asked where we wanted to look for a match. Mommy pointed at his little brother Matthew. They stored his cord blood and tissue just in case it could ever help. A month later Mommy got the call saying that the boys were a PERFECT MATCH and that they only had a 30% chance of that. We believe in God and we believe that God sent us Matthew to cure Michael as she was told we could never carry another child again.
Michael is the most fun loving child I have even known. He has compassion for others, he will do anything to make you smile if you are looking sad, he loves hugs and he loves people. He is different, he is special. He has several symptoms that are not great. He get's leg cramps and muscle spasms, he has seizures, he regresses, he has diarrhea and vomiting until he is in shock, some days he has no energy at all or is in pain, things that no one would want their child to go through. With this Bone marrow transplant Michael could be cured, he would never get worse, his problems would just be like a nightmare once the procedure is done. The problem is that it's not been done several times so we need to get the word out to help get Michael the cure he deserves. Through a full bone marrow transplant we would hope for chimera which means that Michael would have the same DNA as Matthew thus allowing him to live a full life. In the process his little brother is not touched as his cord blood was stored during birth.
This is experimental and insurances won't cover experimental. This is very costly and time consuming. Michaels parents are aware of the risks but they would rather fight to save their son now before it is too late. Eventually the disease will deteriorate his poor body and he won't be healthy enough to go through any procedures. That's why the time is now, we need to spread the word and get doctors to take his case.
We know that Michael can be cured and that is worth everything to us. We need angels, we need heros, we ask you to please join our fight to Save Little Michael.