Please help to raise the funds to take our son for this treatment so he can have a more normal and fulfilling life.
He was unfortunately also born with a rare and dangerous genetic condition called Congenital Central Hypoventilation Syndrome (CCHS ) where he stops breathing the minute he falls asleep. So he uses a machine that breathes for him every time he goes to sleep and also has a nurse that takes care of him during the night so we his parents can sleep. This could have also been a cause of some brain damage before he was diagnosed. Please follow the links for more info; http://www.cchsuk.org
There is no cure for that problem and he will suffer with it all his life but with Stem Cell Therapy he could definitely have a better life by repairing the damage caused to his brain. There is also the possibility to get a medical alert assistance dog that can be trained to take care of him during the night when he gets to his teenage years when his privacy becomes important to him.
Feel blessed if your children are healthy and thank you for taking the time to read this.
Love, Justin & Jana
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