Kansas City,
06
April
2021
|
19:00 PM
Europe/Amsterdam

Duchenne muscular dystrophy limits Nick Crump’s movements – but not his artistic talent

The art world may not know the name Nicolas Crump. But mention this talented young man to those who work in the Children’s Mercy Pulmonary Clinic or on the Palliative Care team, and they’ll eagerly show you the Nick Crump pieces displayed in their workspaces – and tell you how much he inspires those around him to live their best lives.

“Most kids his age with this condition don’t have the ability to move any muscles in their extremities, yet he can create this art in spite of the limitations of his condition,” said Pulmonologist Hugo Escobar, MD. “He is unique and amazing. I’ve never seen anything like it.”

“He is so talented and has so much courage to face each day and truly engage with his life,” added Palliative Care Nurse Tonja Spencer, RN, BSN, CPN, CHPPN.

Or as Palliative Care Physician Jennifer Linebarger, MD, MPH, FAAP, FAAHPM, put it:

“In the past year, there’s been a lot of talk about ‘well, we’ll just have to live with this new normal.’ Nick epitomizes so many of the kiddos we see as they adapt to diseases and disabilities. They and their families have learned to live with their normal.

“It’s not easy, but Nick and his family have risen to it.”

Dragons and fairy tales

Duchenne muscular dystrophy (DMD) is a genetic disorder that causes progressive muscle degeneration due to alterations of the protein that normally helps keep muscle cells intact. There is not yet any treatment or cure for Nick’s DMD-specific genetic mutation that limits daily activities, breathing and swallowing.

Nick is unable to move his arms, requires a ventilator, and has lost the ability to eat without choking. But he’s beating some of the odds – while those affected with DMD often don’t survive past their teens, Nick will celebrate his 22nd birthday this month.

And despite very limited ability to move his hands and fingers, he is able to create detailed art.

His talent emerged early, when he began drawing dragons and dinosaurs around age 3 or 4. In school he sometimes signed his papers with drawings instead of his name, frustrating his teachers, recalled Mendy Crump, Nick’s mom and a nurse at a hospital in Topeka.

Requests from friends and family members pulled him toward other subjects – a buffalo, a giraffe, even a colorful, detailed scene of Little Red Riding Hood and the Big Bad Wolf for his grandfather – which he said “have helped me grow as an artist.”

Others must hand him paper and the pens or pencils he uses to create freehand illustrations drawing dots and short marks. It’s a painstaking process that takes several hours to several weeks, depending on the size and the complexity of the drawing.

His work is not for sale – but it’s good for his soul.

“It gives me a sense of achievement for having accomplished something,” he said. “It makes someone else happy, and that makes me happy.”

Inspiring others

It’s also good for the souls of all those “someone elses” whose lives he touches.

One of his drawings hangs in Dr. Escobar’s office, where it inspires other families, he said. Tonja recalls fighting back tears the day Nick surprised her with an illustration.

“I was so honored, knowing the time, effort and detail he puts into his drawings,” she said.

And Dr. Linebarger has a framed drawing of one of his dragons hanging over the desk in her office, where she looks at it several times during the day, reminding her of the determination it represents and the strong family support that’s central to Nick’s ability to seize a measure of independence in the face of a condition that robs him of so much.

“Nick’s parents very much want him to have a full life, and they’ve helped make tremendous moments and memories happen for him,” Dr. Linebarger said. “There are so many ways Nick doesn’t have independence, it’s been beautiful to see what independence he CAN have.

“When we think about the limitations put upon all of us by outside forces, Nick shows us how to live with limitations beautifully. He makes my heart happy.”

 

Learn more about the Muscle and Nerve Clinic at Children's Mercy