How a Central Pa. family is fighting for a treatment to 8-year-old’s rare disease – Fly Publication

6September 2020

Drew Gunther wanted to see the Grand Canyon.

Drew, 8, was taking a trip with his moms and dads, Steve and Vanessa, and older sister, Brea, 11, across the nation in a cars and truck from Linglestown, Dauphin County, to Burbank, California, for medical treatment in late June.

Drew made a list of locations he wanted to see on the roadway trip, and Grand Canyon National Forest was at the top of it.

“It was my favorite part of the trip,”Drew said. Drew received medical treatment July 3 for Duchenne muscular dystrophy, a genetic disorder that gradually compromises body muscles. It impacts about 1 in 3,500 male births worldwide, according to the National Company for Rare Disorders.

After Drew received treatment, the Gunther family went back to Pennsylvania.

The Gunthers live in Middletown, but have connections to the Lancaster area. Steve is typically in the area for his work as an attorney, and they have family in Elizabethtown.

They visited Arches National forest in Utah along the method back home.

“Even through the difficult times or hurdles, we still try to make the very best out of every scenario and realize we don’t know how much time any of us have, so reconcile it and do as much as you can, and enjoy the time we have actually left,” Vanessa said.

Drew is a fighter, and the Gunther family is working towards discovering a treatment for Duchenne muscular dystrophy through work with their nonprofit.

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The medical diagnosis The day prior to Valentine’s Day in 2019, Drew couldn’t jump onto an exam table at his pediatrician’s workplace. Vanessa had taken Drew and Brea for their yearly wellness go to.

When the pediatrician asked Drew to get up off the flooring– a test of his physical ability– Drew had difficulty finishing the job. The pediatrician likewise kept in mind Drew’s big calf muscles, a potential sign of muscular dystrophy. The pediatrician sent Drew to get blood work that same

day. The next morning, Drew had a diagnosis: Duchenne muscular dystrophy. Till that point, his moms and dads hadn’t thought anything. Drew was a bit slower sometimes running around then other kids. He had a hard time getting up the stairs and would

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tip over often. But no one thought Drew

had a condition.”We just thought’OK, he’s a bit shorter for his age, not too brief’,”Steve said.

“We thought perhaps he was just a bit awkward, still turning into his body as a 7-year-old. “No instructor or previous medical professional had identified anything. But the Gunthers were thankful this pediatrician did. Now they could begin developing a strategy.< div class="inline-asset inline-article subscriber-hide tnt-inline-asset tnt-inline-relcontent tnt-inline-article tnt-inline-relation-child

tnt-inline-presentation-short-summary tnt-inline-alignment-default tnt-inline-width-default “> New challenges As the Gunthers started preparing, the disorder started even more impacting Drew’s mobility and senses. Drew went from being able to pace specific actions to not being able to even crawl up and down them. Sudden and loud noises impacted him more than typical. “Just everyday little things that you would see a difference in,”Steve said. About 2 weeks after the medical diagnosis and learning about different treatments for Drew, the Gunthers were upset and dissatisfied. They couldn’t discover a reliable treatment that would help Drew long-term without side effects. They took a different approach.”We decided that what was the point of living if we weren’t going to resist and do all we could to make certain that Drew was getting the very best care he could get,”Vanessa said.

The Gunthers started a charitable company, which they later named Wishes For Drew and became a not-for-profit

. With Wishes For Drew, they could raise funds for different speculative treatments and treatments. Among those treatments involved using umbilical cord blood stem cells. With that treatment costing$7,500 per usage and Drew needing it continuously, the Gunthers made a Facebook post and started a GoFundMe page in March 2019.”It was generally our time to say’Thanks for the prayers. Thank you for your ideas. This is what we need to do. These are the objectives we wish to reach. This is what we need to do for Drew,'” Vanessa said. Vanessa’s cousin and her hubby tossed a band night fundraiser at the Moose in Middletown throughout Mother’s Day weekend in 2019. The occasion raised sufficient money for one of Drew’s treatments.

Remedy Rare Disease

The Gunthers continued looking into different treatments and kept stumbling upon Remedy Rare Disease, a not-for-profit concentrated on providing alternative treatments started by Rich Horgan.

Treat Rare Disease’s objective is to work on different rare illness, but presently its mission is concentrated on establishing tailored rehabs for patients with Duchenne muscular dystrophy.

Steve started talking with Horgan on Facebook and stayed in touch with him through late 2019. Horgan invited the Gunthers to participate in webinars his company hosted and addressed any concerns they had.

“I really valued the truth how CRD was running things,” Steve said. “They were working with the FDA. They were going through the right channels, they were working with a few of the outright finest scientists and doctors in the DMD field and to have a medical group like that put in place indicated a lot to us.”

Steve states the family wants to rely on medical facts, clinical facts and research.

In July, Steve became a founding ambassador with Remedy Rare Disease, under which Drew could get a potential treatment in the future and the family can bring awareness to the company.

Getting in touch with others in the Duchenne muscular dystrophy community is something Steve takes pleasure in doing. Steve reaches out to households to offer suggestions and encouragement.

“We need to share as much info and understanding and unity as we can to approach an issue that hasn’t been fixed yet,” Steve said.

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Browsing a pandemic COVID-19 has presented another challenge for the Gunthers. Drew had different consultations canceled throughout the summer leading up to an annual go to with the medical professional, who diagnosed him, in September. That appointment, however, is still on track.

Since of COVID-19, fundraiser events for Wishes For Drew likewise were canceled. But with restrictions slowly being lifted, the nonprofit is starting to rebound.

”I believe we’re finally starting to see a bit of light at the end of the tunnel,” Steve said.

Plus, Drew’s health is steady.

He extends frequently and wears leg braces to help him stroll. He continues to take supplements and medications for the disorder. He’s even had the ability to utilize the actions by himself within the past 2 months.

The Gunthers are positive.

“Today, it’s more of the same working to keep him really steady since we do believe that Remedy Rare Disease is going to have an answer for us whether it’s 2 or three, 4 years,” Steve said. “We believe the response’s coming, and we just need to have the ability to keep Drew healthy and mobile and happy till that day.”

MORE INFORMATION

For more information about Remedy Rare Disease or to donate, check out cureraredisease.org.

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