Medical Out of Pocket Expenses

My son's Brody & Bentley were both diagnosed with a rare but serious disease called MPS II also known as (Hunter Syndrome). Brody was diagnosed at 3 months old and Bentley at only a few weeks old. Hunter Syndrome is a rare disease that is passed on in families. It usually only affects boys. Their bodies can't break down sugars, so it builds up in the cells and causes damage to many parts of the body including the brain. The effects of Hunter Syndrome include, large round cheeks, broad nose, thickening of the tongue and lips, large head, stunted growth, bushy eyebrows and broad hands with stiff, curled fingers. Also joint problems that make it harder to move, numbness, weakness and tingling in the hands. Respiratory infections such as colds, coughs,sinus & throat infections. Trouble breathing at night or sleep apnea. Hearing loss and ear infections are the most common. Trouble walking and weak muscles, bowel problems, heart problems including damaged heart valves a d enlarged liver & spleen. When the brain is effected, it causes trouble thinking and learning by the age of 2 to 4 years old. Trouble talking, behavior problems, such as aggression or hard time sitting still. Kids who have Hunter Syndrome are usually cheerful and affectionate, despite the problems it can cause. Some things to expect without treatment are some boys with less severe hunter syndrome grow up and live long lives. Boys with severe hunter syndrome are less likely to reach adulthood. Their brain will slowly stop working, they will lose their ability to walk, talk and much more. Eventually they will need special care to keep them comfortable.
Although their is NO CURE for hunters at this time there are ways to help manage it and live with the symptoms. Treatments are available which are Bone Marrow/Stem Cell Transplant. Transplant bring cells into your child's body that can hopefully make the enzyme he's missing. The new cells come from a donor, whose cells match your child's, or from the umbilical cord of a newborn baby. He then will receive chemo therapy to wipe away his old cells and replace them with new ones.
Bentley will be needing a stem cell transplant at Children's Hospital in Pittsburgh.
Bentleys older brother,Brody had a stem cell transplant at 10 months old. Brody is now 4 years old and doing great. His health is good and he is learning new things everyday. Without the transplant, I don't think he would be doing as good as he is now. Me and their father stayed in a Ronald McDonald house connected to the hospital for about 8 months and 2 months of that in the hospital with Brody during transplant. Brody still has different kinds of testing to check up on his heart, brain, enzyme level, donor cell count and more throughout his life to make sure nothing gets worse. Bentley needs your help and support with medical expenses and the cost of transplant. WV medicaid is refusing to pay. He really needa all the support he can get so he can grow up and live a long, happy life with his big brother! IT'S HIS ONLY CHANCE!!! All donations will be greatly appreciated and no amount is too small.....Thank you so much to anyone and everyone who can help my precious baby boy Please keep my babies in your thoughts and prayers as they continue their Hunter Syndrome Journey