Little Boy at Risk of Never Walking Again

While other kids his age run amok in the wildness of their Terrible Two’s, Lincoln Woodmass remains immobile. No running, no jumping and the possibility of never walking again.

You see, two-year-old Lincoln suffers from Spinal Muscular Atrophy, but his parents, Tania and Regan, are refusing to let this thing permanently affect their son’s life.

It started happening shortly before Christmas last year when a family friend pointed out that Lincoln’s legs seemed off. Tania and Regan assumed it was simply his flat feet learning how to walk. Either way, they saw a specialist at Waikato Hospital in New Zealand where they shot videos of Lincoln walking.

The worst case scenario was Spinal Muscular Atrophy and they were told it was unlikely.

Until that’s precisely what he was diagnosed with on April 12th.

“We’re still going through the grief period,” said Tania to the NZ Herald. “They have told us he will eventually be robbed of his ability to walk. That’s a huge thing. He’s so limited in what he can do and he’s such a determined little man. He falls and you try to pick him up and he goes, ‘No. I’ll do it, I’ll do it’.”

This extremely rare genetic disease corrupts the part of the nervous system that is in charge of voluntary muscle movement. According to the Muscular Dystrophy Association of New Zealand, there are about 75 known cases in NZ. Of those, 32 were in people under 18 and the rest in people over 18. The most affected muscles are those in the shoulders, hips, thighs and upper back. To learn more about SMA, click here.

The disease prevents Lincoln from running around with his friends and he easily falls over when touched. But every time he falls, he makes his way back up again on his own.

His parents bought him his own custom helmet to prevent injuries but getting him to wear it was a struggle when he noticed he was the only kid wearing one among his friends. Tania and Regan feel like they have their hands tied, especially since there are currently no treatments in New Zealand.

They are setting their sites on the United States and have begun the fundraising process to cover travel costs and the expensive unfunded drugs.

But there is hope on the horizon. A new drug has been approved by the FDA called Spinraza for treatment of Spinal Muscular Atrophy. It could potentially slow or stop, or reverse the symptoms.

The Woodmass family remains hopeful that Lincoln might be eligible for a trial. To support them on their journey, click here. To donate to Muscular Dystrophy New Zealand, click here.

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