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Tucson boy among youngest receiving miracle drug

Posted at 6:27 PM, Aug 18, 2017
and last updated 2017-08-18 21:30:25-04

A 2-year-old Tucson boy Aayden Estavillo has a big dream of walking. 

Aayden has SMA, Spinal Muscular Atrophy but a new drug may change that.  

Like other kids, Aayden is full of life and funny but unlike other kids he never had a chance to walk or crawl.  

While the kids understand and cater to Aayden they have to make sacrifices. 



"Sometimes they have to make sacrifices instead of going outside they have to play inside," says Ryan Estavillo, father of Aayden. "To see the other kids running and jumping and playing like normal outside on the trampoline or just running outside, he wants to be part of it and he can't." 

"We have to carry him everywhere, he has wheelchair and special stroller," says Estavillo. 

A new drug called Spinraza may change that. In April, Aayden under went the six loading doses. 

While it isn't certain that Aayden will walk again, the idea of hope is what the family holds onto. 

"I don't care if he ever runs but if he can walk and feel normal that would mean the world to us," says Estavillo.

Aayden is receiving treatment at Banner University Medical Center and will receive treatment for the rest of his life. He is among the youngest kids getting Spinraza doses.

Dr. Katalin Scherer with the University of Arizona Department of Neurology says, "One of the clinical trials started treatment at less than 6 weeks of age, and the pivotal clinical trials treated infants a few months old." 

On top of the doses of Spinraza, Aayden goes to weekly therapy. 

If you would like to donate to #TeamAayden go-fund-me, click here.

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