Nathan's Stem Cell Therapy for IRF2BPL Take 2..

Hello! Our names are Andrew and Jericha, and our 2-year-old son Nathan is the sweetest baby ever!

In August, he was diagnosed with Autism.  After receiving guidance from his amazing pediatric OT aunt and BabyNet, all of his therapies were in place (We are so grateful for BabyNet and his therapists). We were so hopeful that, although he stopped saying "mama" and "dada," he would one day regain those skills and excel in all areas. 

Devastatingly, after whole xome genetic testing, we found he has an ultra-rare genetic variance IRF2BPL (Interferon regulatory factor 2 binding protein like). IRF2BPL is a regressive disorder that can be outwardly expressed at any time. We are trying to stop it before it starts, and his doctor thinks he will benefit from stem cell therapy.   Of course, it is not covered by insurance. While stem cell therapy is not a guarantee, it has given us hope for Nathan's future. IRF2BPL has been described by some as eventually being a prisoner in your own body. There is a chance he will begin to have seizures and lose all of his functions without warning of when it will start. Imagine analyzing every movement, or non movement, of your child, wondering, "Was that a seizure?"

 We really dislike asking for any  help for our children, but we are praying that people will help us with this first stem cell therapy (and the intensive OT and PT therapy he will need after), so we can do it as soon as possible. We pray that it is successful and we will be prepared to continue to do it as often as he needs it during his life. Thank you for reading this! Even if you can not help financially, we just ask that you please keep our Nathan in your thoughts and prayers. We believe in the power of prayer!  He's our little "Naughty Nathan" (going through terrible 2s full force without saying a word)!

Thanks to a community rallying for Nathan, we believe this stem cell will get done, and he WILL be the first glimmer of hope for parents to read about when they receive the devastating news of IRF2BPL. We will be updating everyone as soon as possible! 

Thank you again for reading about our Nathan,
Andrew and Jericha