Washington mother of 2-year-old with rare disorder shocked at price of treatment

Published: Jul. 30, 2019 at 4:37 PM EDT
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Wade Hosey, 2, of Washington has Spinal Muscular Atrophy or SMA. It's a rare genetic disorder that affects the neurotransmitters that send the signals from your brain to your muscles to move. Without this protein, the muscles stop working altogether.

Wade's mother, Nicky Hosey, found out about Wade's condition when he was around 18 months old. She noticed her child wasn't walking as quickly as other children. She eventually took Wade to a therapist who noticed that his core and legs were weak. After two months of waiting for test results, he was recently diagnosed with SMA. The disorder typically leaves those who contract it wheelchair-bound. The news broke her heart.

Nicky says, "At first, you're heartbroken that your kid's different than everybody else. He was 18-19 months old and his legs had the strength of an 11-month-old."

Nicky says Wade's symptoms are shaking of the hands, he has to hold something to take steps, and he gets tired quickly after long periods of physical activity. In extreme cases, some people with SMA can't hold up their torso or head and have to live on a ventilator.

The treatment for this disease costs 2.1 million dollars—a price the Hosey family wasn't prepared for. Even with insurance, the treatment can still cost hundreds of thousands of dollars. Nicky says there is no cash-out payment for a reduced price available either. And all of the clinical trials are full, which is her only hope.

The treatment is a one-time injection that supposedly slows down the degradation of the muscles, and it only came out within the last two years.

Nicky said, "It's crazy when you hear that a medicine that—my kid's life is worth more than $2.1 million. And when you hear medicine's that much you kind of just...What do you do? You don't know what to do."

Luckily, Wade's disorder doesn't stop him from being a regular kid. At Havens Gardens Park, he chases frogs, slides, and he loves to talk. He's saying "please", "thank you", "golf cart", "Mimi", and more!

Wade's mother is hoping his story will bring awareness—not only for Wade but other little kids just like him. She wants to give him as normal a life as she can.

The Hoseys have set up a Go Fund Me account to help raise money for treatment and other medical expenses. You can find it by searching "Walking with Wade" on the GoFundMe website.