LITCHFIELD PARK, AZ (3TV/CBS 5) - A west Valley teen fighting a rare disease is inspiring others to never give up.

Doctors diagnosed Alyssa Holguin of Buckeye with Rett syndrome when she was 2 years old.

She's not able to walk or talk but has a high-tech device that helps her communicate.

Rett syndrome is a genetic neurological disorder that seriously impacts a child's ability to physically function. 

Alyssa is now 16 years old.

Her mom, Kris Holguin, said her daughter is alert and aware of what's going around her, but her body can't react to what her mind wants to do.

Kris described it "like being trapped in your own body" and "like being able to hear and see everybody in this room talk and screaming at the top of your lungs and nobody hearing you."

Alyssa is homeschooled and goes to physical therapy at Foothills Sports Medicine Physical Therapy in Litchfield Park three times a week.

Her physical therapists are Russell Semmler and Ashley Wheeler. Both treat her like family.

Wheeler said she and Alyssa have formed a special bond during their sessions.

"One of the coolest qualities about Alyssa is how much of a fighter she is," said Wheeler. "She's always fighting for herself to get better."

That fierce attitude inspired Wheeler to look at her own life and make healthier choices.

"I started running because of Alyssa," said Wheeler, who had a hard time lifting her patient at first.

Since marathon training, Wheeler lost 60 pounds.

"She completely changed my life for the better," Wheeler explained.

Her motivation was to get healthier so she could be a better physical therapist to Alyssa.

While talking with Kris during Alyssa's sessions, the women realized Alyssa would like "running" too.

"She enjoys outside and she enjoys seeing new things and people and engaged," said Kris.

So the two women plan to sign her up for her first half-marathon at Disneyland next year. Wheeler will be pushing her wheelchair.

Alyssa loves Disney movies, especially "Lilo & Stitch."

However, they need help raising money for a racing wheelchair since it's not covered by insurance.

The daily wheelchair she uses now won't work or be comfortable for a several-hour race.

The racing wheelchair, which helps with better posture, costs between $5,000 and $7,000. The design also helps the person pushing the wheelchair navigate better. They have set up a GoFundMe account to help pay for the chair.

"Once we do a chair, we're hoping to raise money for Rett research to be able to find a cure," explained Kris who wants to give her daughter the freedom to do what she wants, whenever she wants how she wants. "Give her more than just therapies and sitting and watching Disney movies or give her a sense of purpose and something for her to accomplish as well."


Copyright 2018 KPHO/KTVK (KPHO Broadcasting Corporation). All rights reserved.


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