Molly’s Kids: Update on now 15-year-old Emily Cook, living with KIF1A

Molly’s Kids: Update on now 15-year-old Emily Cook, living with KIF1A
We’ve been following Emily’s journey with KIF1A Associated Neurological Disorder for three years. (Source: Photo provided to WBTV)

CHARLOTTE, N.C. (WBTV) - Can’t believe how mature and beautiful 15-year-old Emily Cook looks in her new school picture.

We’ve been following Emily’s journey with KIF1A Associated Neurological Disorder for three years. Her mom, Julie, sends enthusiastic, wonderful updates from their home in Shelby. This week she sent a handwritten note with her daughter’s school picture.

If you don’t remember past posts, Emily used to be one of only 66 people living with KIF1A in the world. Now there are about 200 cases. There is one doctor – Dr. Chung – trying to find a treatment for kids with KIF1A. Dr. Chung says she believes many kids are misdiagnosed as having Cerebral Palsy, when really, it’s this.

Emily, in fact, was first misdiagnosed as having CP.

Julie is a dedicated mother trying to find answers to help Emily. No doubt helping her daughter have a better life, is Julie’s biggest mission in her own. Her handwritten card this week talked about “rare diseases” working together, and how KIF1A.org and Dr. Chung’s lab at Columbia University Irving Medical Center is collaborating with other labs and organizations. Any progress for KIF1A, she says, is progress for other overlapping diseases.

“Rising tides lift all boats!” she wrote.

She also said she and Emily are excited to return to a KIF1A conference in New York this summer. Last year was their first time attending – was actually the first time for the conference – and they met many other families in similar situations. (For more on that trip, read >> http://tinyurl.com/EmilyCook4MKs.)

“While there this summer, we’ll give blood samples and other data will be collected to help with research,” she said. “We’ll get the latest updates and time with other kids and parents like us again, too. That was the best part last year. Making connections with people who understood us.”

Julie also sent an update on Emily’s personal fight.

“Emily is in her first year of high school,” she said. “She works hard and is brave and relentless, but despite all the therapies and specialists, it is becoming very hard for her to walk, even with assistance. We need a treatment or cure so she can work to make progress instead of showing decline.”

#MollysKids

PS: Thank you much for the M&M’s and wrist bands, found attached to this school picture.

*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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