A little North Platte girl with a rare disability needs help to travel to Philadelphia to one of the only medical specialists that understands the condition.

Willow King was born in February 2022 with a rare genetic mutation and her parents, Melina Lambson and Forrest King, later learned that the disability is one of kind.

In the hospital

When Willow was just a few months old, her parents noticed her struggles to hear and to eat. They sought medical advice, leading to tests and treatments at the Children’s Clinic in Kearney and the University of Nebraska Medical Center.

Willow was eventually diagnosed with a variance of Cornelia de Lange Syndrome. Only one in 10,000 babies are born with CdLS. Willow is even more unique. Of the 5% of children in the SMC1A range, none have been reported with Willow’s variance.

To raise travel money, friends and family members have organized a 5K competitive race and 1-mile fun walk/run at North Platte’s Cody Park on Saturday, Sept. 23 to raise money for the trip to Philadelphia.

Registration will be at 7:30 a.m. in the Cody Park pavilion. The walk/run begins at 8:30 a.m. and the 5K at 9 a.m. The entry fee is $25 and includes a tee shirt.

Organizers are hoping for a big turnout, and they are encouraged by the support so far. As of Sept. 12, 100 runners had signed up.

There will be a bake sale and a rag quilt raffle too. The top male and female runners will each receive $100.

On a better day

Donations can also be sent to: Venmo address: Melina-Park-1. Cash App: $MelinaPark. For more info, see Walkforwillow on Facebook and willowsjourneyofcourage.com on the world wide web.

Despite the obstacles, Willow’s spirit shines bright, inspiring people to come together to support her, the website says.

Natasha Burch and Stacy Munoz are organizing the race from North Platte. Melina’s childhood friend Hannah Skow, who lives in eastern Iowa, has also spent a lot of time on the phone helping make arrangements. Skow, her husband Brock and their young child plan to be on hand for the race. Brock plans to run the 5K, Hannah said.

(This report was first published in the Bulletin’s Sept. 13 print edition.)

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