Gainesville family seeks wheelchair for teen with muscular dystrophy

GAINESVILLE, Fla. (WCJB) - A family without health insurance says their teenager is in dire need of a new wheelchair as they struggle to afford the rising cost of healthcare.

Fifteen-year-old Santi has Duchenne muscular dystrophy. He was diagnosed at 11 months old.

Santi was able to walk until 2023, when the disease progressed. He can no longer lift his arms or legs on his own.

His parents, Matias Raby and Patricia Gana, said the automatic wheelchair is his form of transportation and a sense of comfort.

“The wheelchair is everything for him. It’s everything: how he moves around, how he can go to school,” Raby said.

The family left Chile and moved to Gainesville in the hopes of finding treatment and a better future for Santi. He is involved in a clinical trial and goes to physical therapy, but there is no cure.

Santi loves hanging out with his friends and gaming. He plays Roblox and Minecraft on the computer and builds LEGO sets.

A new automatic wheelchair will cost around $40,000. His current chair no longer fits him properly and is not safe for daily use.

The family says a new wheelchair can improve Santi’s quality of life while they navigate through multiple doctor appointments and a clinical trial.

“We have a good life, decent life, but all these medical things, especially without healthcare, we’ve always worked with institutions and foundations, so he needs, on top of like the regular kids things, he needs to go to the dentist, and eye doctor, and whatever, he needs like all this additional machinery. And everything is like $4,000 and things like that,” Raby said.

If you’d like to help the family fundraise for a new wheelchair, click here.

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