Greater Harrisburg's Community Magazine

A Wish, a Journey: Harrisburg-area family ventures across country to seek disease cure

Gunther family in front of their RV.

It was a diagnosis that “just hit us out of nowhere,” Vanessa Gunther recalled recently.

It was the day, two years ago, that her family’s life changed forever.

Vanessa and husband Steve, of Linglestown, had noticed that their 7-year-old son Drew moved slowly but thought, “He was a little bit uncoordinated,” Steve said.

However, Penn State pediatrician Jessica F. Butts suspected otherwise when observing Drew struggle onto an exam table during his regular wellness check, and she ordered further blood tests.

As it was, the test results would confirm exactly what the doctor suspected.

Drew was diagnosed with Duchenne Muscular Dystrophy, a genetic disorder found primarily in boys and that affects about 1 of every 3,500 children. The disease is characterized by progressive muscle degeneration and weakness caused by alterations of the body’s dystrophin proteins. Drew’s diagnosis is 100% fatal, according to his father.

“The dystrophin gene is the largest in the body and responsible for maintaining muscle,” Steve explained. “Without proper dystrophin production, the muscles waste away, and you cannot build and maintain new muscle.”

This disorder affects every muscle in the body, usually starting with the legs and hip, but eventually reaching the heart and lungs, which is typically the cause of death in the late teens or early 20s, he said.

Most youngsters lose the ability to remain mobile without the use of a wheelchair by 10 to 12 years old, although some may take longer, Steve added.

The family learned of Drew’s diagnosis on Valentine’s Day 2019.

“It punched me in the stomach,” Vanessa recalled. “Everything I knew disappeared then.”

However, no one in the family was ready to give up, least of all Drew.

“Drew’s a champ,” Steve said. “He’s probably better with this than most adults.”

Drew soon began a regimen of specialized treatments through a clinical division of the Penn State Hershey Medical Center.

“Almost all of Drew’s treatment at HMC has been covered until recently when we got our first small bill,” Steve stated.

Meanwhile, Steve and Vanessa stayed busy scouring the internet for research taking place elsewhere. Various experimental treatments for the disease were underway at a handful of far-flung facilities across the country. But fresh hope came with a catch.

Experimental treatments, not yet certified by the U.S. Food and Drug Administration, didn’t qualify for payment by the Gunthers’ insurance. If Drew accepted experimental treatment without FDA approval, his family would face unreimbursed medical expenses. For stem cell treatment available in California, the Gunthers would have to pay around $50,000 per year out of pocket, Steve said.

So, in 2019, the family initiated “Wishes For Drew” as a series of fun local events raising funds for their son to pursue treatment in California. Throughout 2019 and 2020, the family hosted live fundraisers throughout the area, which included several “Pint Nights” sponsored by local breweries.

In early 2020, Wishes For Drew was formally established as a nonprofit entity. Sadly, live fundraiser events were placed on an abrupt hold around that time due to the pandemic, leaving the Gunthers to devise safer fundraising methods. Vanessa began selling her crafts, and the family established a second GoFundMe page. Still, they lost tens of thousands of dollars’ worth of donations since the onset of the pandemic, Steve estimated.

The Gunthers’ biggest act, however, was still to follow.

Last October, the Gunthers set out on the road in a 1996 Georgie Boy Pursuit Class AV destined for an experimental treatment for Drew in Irvine, Calif. It would take five days of driving to get there.

To fund the trip, Steve and Vanessa sold their three-story townhouse in Linglestown and purchased a 32-foot RV. The townhouse had become burdensome for the family to live in, anyway, because Drew could no longer climb steps.

In California, Steve continued to work remotely as an attorney while Drew and sister Brea, 12, took online studies through Reach Charter School. Meanwhile, Vanessa continued taking care of everyone.

“The biggest challenge for us is probably the lack of space and privacy,” Steve said.

Steve and Vanessa decided not to make the return trip to Pennsylvania until this spring, as Drew’s muscles feel better in West Coast warmth during the winter.

As an added bonus, the ongoing stem cell therapy that Drew receives in Irvine every eight weeks appears to have alleviated DMD symptoms between treatments.

“Drew feels better now,” Steve said. “He has a lot fewer falls, he breathes easier, and his overall mood’s been better. Before, he couldn’t even pump a hand soap dispenser. If he didn’t have treatment, he couldn’t pull himself up steps.”

Nonetheless, Drew remains limited in his day-to-day activities. In his spare time, he sticks to hand-controlled play that doesn’t hurt his muscles, such as running remote-operated cars and of course, video-gaming. According to Drew, Minecraft and Fortnite games are his favorites.

In the meantime, Steve and Vanessa serve as founding ambassadors for Cure Rare Disease, a nonprofit biotechnology company based in Boston.

“Cure Rare Disease focuses on fixing the genetic mutation and inserting the fix through CRISPR,” Steve explained, citing the promising gene-editing technology. “Their approach will be for any rare genetic disease and not just DMD.”

In retrospect, Steve and Vanessa acknowledge that, some days, it’s harder to stay positive than others. All in all, however, the couple agrees that all their effort feels worth it when they “see Drew and how much it benefits him,” Steve said.


To learn more about or donate to Wishes for Drew, visit
www.wishesfordrew.org or their Facebook page.

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