Amazonia family uses race to raise awareness of rare diseases | Local News

When Henderson Lehman was born, her parents noticed that she had some disturbing quirks.

The newborn had difficulty swallowing and tended to have epileptic-like episodes where one side of his body became limp.

“We spent over a year before we even found a name for what we thought she had, and then it took 18 months to get (a diagnosis),” said Brooke Lehman, Henderson’s mother. .

Henderson was diagnosed with alternate hemiplegia in childhood, a rare neurological condition that causes recurrent episodes of temporary paralysis, often affecting one side of the body. It is a disease that affects one in a million children and is incurable.

“There are no treatments. However, they are somewhat at the forefront of the search for a cure, which is gene therapy. But they need funding, ”said Lehman, of Amazonia.

Wanting to be part of the solution and bring attention to the HCA, Lehman hosted the 2021 Hero Hustle 5K Run / Walk, starting at 9 a.m. on Saturday, October 9 at 1502 MacArthur Drive.

Although Lehman has participated in other fundraisers, the event is the first she is hosting. After seeing the progress on a cure, as well as the loneliness and frustration a rare disease can cause, she and her husband, Hunter, didn’t want to be passive bystanders. They wanted to help.

“I feel like it kind of gives us a way to channel our energy, to feel that we are doing something to help these kids because it’s sad when you get a diagnosis and there is no isn’t something that can automatically fix it, ”Lehman said. “So that kind of helps us give ourselves a goal, something that we can do to try to solve this problem. “

For the Lehmans, verbalizing to other people what Henderson is dealing with is difficult. Although they are part of online support groups, they have never met another family dealing with AHC. At the start of her episodes, they couldn’t find a doctor who could diagnose them.

“It took us a few months to go to different neurologists and say, ‘Hey, is that what she has?’ So to finally feel validated and a (neurologist) saying “I think that’s what she has.” It was devastating but also a kind of relief to finally have an answer, ”said Lehman.

When Henderson is having a good day, she is brave, horny and talkative. When she has episodes, the family goes out of their way to alleviate her discomfort, from reading to her and suppressing loud noises to sitting in the dark.

“We never let her play alone in a room… We have a lot of dates. I think we were, like, in Kansas City at the Children’s Mercy once a week every week in the summer, ”she said.

Henderson takes several types of medications and attends speech therapy, physiotherapy and occupational therapy.

“It’s constant rehab and just working with her on skills that might become easier for other kids that we really need to practice with her,” Lehman said.

For the Lehmans, going through episodes makes the good days even sweeter. Henderson has recently started saying what Lehman calls “his version of the trick or treat” and loves to make animal noises.

“She loves to play with babies. When she feels good, she is very talkative. She loves to say hello and is very (conversational) even with strangers, ”Lehman said.

Over the past year, the Lehmans have visited several care facilities for children with AHC, including Duke Health, a children’s hospital in North Carolina specializing in AHC therapies, which has given them the most hope. Beyond helping support this, Lehman said she hopes the run will spread the word and help parents who may be dealing with children with HCA who don’t know it.

“Obviously funding for gene therapy is so important to me, but I feel like my biggest problem is just getting to know what it is, what it looks like because I was there. down every night searching on Google: “What’s going on?” “So I really feel for these parents who don’t have a diagnosis yet,” she said.

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