"My sweet handsome son Matias was diagnosed at age 2 after he regressed and wasn’t able to crawl walk and talk it took a lot of blood test and genetic testing to finally get the answers of what was going on with our son! He is now 9 1/2 years old and over time now has a feeding tube as well as a tracheostomy and scoliosis! He is in a wheelchair and needs 24/7 care in which I provide for him. Even through all the hospital stays and back and forth to UC Davis where we receive all his care and help from his amazing doctors, he is still a happy boy and is healthy overall, his disease will not stop him from being him, he is very loving and sweet and happy as he can be everyone loves him and he is a very strong boy, he is my inspiration and I wish to be as strong as him!! He needs a nurse to attend school and he loves school and all the interaction from his classmates he loves hearing all the students talk and laugh. He loves to watch his movies and be read to and enjoys getting loves from his family members. We all love him ❤️. I hope there will be more hope for a cure for this horrible disease! 🙏🏼For a cure!!"