Ty's Norrie Disease Help

Ty is 7 years old. He was diagnosed with the Norrie Disease at age of 9 months. This is a rare progressive disease that causes blindness, hearing loss, mental retardation, problems with the muscular vascular system, and development delays. Ty is also being evaluated for Autism Spectrum Disorder. Ty receives eye surgeries at Massachusetts Eye and Ear Infirmary in Boston, MA. Because this disease is so rare, there is no financial assistance available for Ty. We pay for the transportation to go to Boston and all his medical bills out of pocket. This has become a hardship on our family. Each surgery costs us about $3000.00 after insurance. Not including the amount to get there. Any help to get Ty to his appointments are appreciated. Most kids with the Norrie Disease become blind by the time they turn one, we are blessed to say that Ty does have some sight, thanks to Mass Eye and Ear. Ty will never be cured of the Norrie Disease, and will need surgeries for the rest of his life, or till he loses his sight completely. If there is any more information you may want to know about Ty or the Norrie Disease feel free to contact me at [email redacted]