The story of Ellen
My son Evan wasn’t diagnosed till he was almost 5 years old with a rare genetic condition called RPL 10. I’ve come to find out the we are the only family to have this genetic condition. I’ve watched my poor son suffer for 8 years from infections seizures uncontrollable movement disorder immune problems and hearing loss. it’s been an uphill battle to find specialist to deal with his very rare condition and trying to treat each one of his problems. no one wants to see their child go through this especially when you can’t find any answers. I spent a good part of his life in and out of the hospital in the picu just trying to get through the next day with him. Even with all his  struggles, he’s managed to have an amazing life and be the great joy of my life .