Molly's Kids: New drug + new hope = inspired mom - | WBTV Charlotte

Molly's Kids: New drug + new hope = inspired mom

(Source: Family) (Source: Family)
(Source: Family) (Source: Family)
BURKE COUNTY, NC (WBTV) -

Luke Harris as a 3-year-old... Luke Harris today at six.

Got a note from Luke’s mom this week. We hadn’t spoken since I wrote about her son back in 2014. She said he’s now in kindergarten at George Hildebrand Elementary School in Burke County.

“Not sure you’ll remember,” Kelly Harris wrote. “But you helped spread awareness about a fundraiser for Luke to raise money for his power chair. Today I’m writing to spread HOPE to you.”

First, I remember all our amazing #MollysKids.

Secondly, Luke looks great! I'm so glad you wrote, Kelly.

Luke was confined to a wheelchair soon after being diagnosed with Type 2 Spinal Muscular Atrophy at the age of one. That's why he needed a special chair in 2014.

Kelly said he started a drug trial – something called Nusinersen -- over a year ago. The trial is out of Orlando, Florida. So far it’s helping tons. He is better with fine motor skills like cutting with scissors, writing more precisely and raising hands above his head. It also helps him with better core strength and crawling.

“He can get in a crawl position on his own and maintain the stance for almost a minute,” Kelly said. “I know it seems small but for us it’s HUGE because he’d lost that ability by 18 months old.”

Why does Kelly want to share this?

“I hope Luke’s story will help other Spinal Muscular Atrophy families know there could be a cure on the horizon,” Kelly said. “What we’re witnessing in our household is a miracle.”

Different medicines work differently on different people. That must be said. But Kelly’s excitement is contagious. She sent videos (that I can’t figure out how to post with a picture) that show Luke trying hard to crawl down a mat. That's a far cry from 2014.

But I like how his big smile hasn't changed.

Thanks for the update, Kelly. Another SMA family might read this and really get something out of it.

-Molly

PS - Click HERE to see Luke's original #MollysKids post from July 2014.

Editor’s note: This is about one of #MollysKids, children WBTV Anchor Molly Grantham follows closely on her Facebook page. It was first published
there – which is why it’s written in a personal way. For years Molly has followed hundreds of kids with uphill medical battles. Find this story (and updates on all #MollysKids) here.

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