- Tuberous sclerosis complex is a genetic disorder that has a wide spectrum of effects on one’s functioning, which can include seizures, cognitive delays and sometimes autism.
- Around 50,000 people in the United States are diagnosed with the disorder, which has no cure.
- On Sunday, Dewey Beer is hosting Pours 4 Parker B from 1 to 4 p.m., a fundraiser in which all money raised will support the TSC Alliance, a nonprofit group based in Montgomery County.
Ryan Beebe distinctly remembers receiving a call from his wife, Andrea, during her 35-week pregnancy checkup with their second child.
“She called me and I could tell she was upset,” Beebe recalls. Their soon-to-be son, Parker, had tumor growth around his heart after the doctors had noticed an arrhythmia.
Parker was later diagnosed with tuberous sclerosis complex, or TSC, a disorder that causes tumors to grow around organs. In the four-plus years since his birth, the community has rallied around him to raise awareness and fundraise for the rare disease.
His father, now the manager of annual giving and partnerships at the TSC Alliance, is spearheading a fundraiser this Sunday at the Dewey Beer Co.’s Harbeson location.
On Sunday, Dewey Beer is hosting Pours 4 Parker B from 1 to 4 p.m., a fundraiser in which all money raised will support the TSC Alliance, a nonprofit group based in Montgomery County, Maryland, that aims to raise awareness and fund research for the disease.
Parker’s father has run other events including hot sauce fundraisers on Facebook during the pandemic and an event at Bin 66 in Rehoboth last summer − all efforts that amount to over $180,000 in direct donations to the TSC Alliance.
Sunday’s event is free to attend and will have raffle items (one being a one-week condo stay in Lewes), a DJ spinning vinyl records and beer from the host company. Plus, all tips collected at Dewey Beer’s Harbeson site up until the end of the month go straight to the TSC Alliance.
“I’m super excited getting to have all of the people come in and getting to honor Parker,” Dewey Beer’s Krissy McCluskey said.
Raffle tickets can be purchased online at this link. It is not required to be at the event in person to win the items, as they can be shipped anywhere in the U.S.
Tuberous sclerosis complex and its effects
TSC is a genetic disorder that has a wide spectrum of effects on one’s functioning. In some, it goes undetected. In others, the condition comes with seizures, cognitive delays and sometimes autism.
Around 50,000 people in the United States are diagnosed with the disorder. While there is no current cure, early detection and intervention are most important to prevent further developmental delays.
The most critical thing for parents of newborn children with the disease is to look out for epileptic seizures − even if they’re not the most obvious.
“They can be missed or misinterpreted,” said Steve Roberds, a chief scientific officer at the TSC Alliance, who noted that seizures are often subtle in those with TSC.
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He also provided insight into why the condition is considered a “linchpin disease” for other conditions such as autism, epilepsy and cancer.
Epilepsy affects about 85% of people with TSC, Roberds said, while autism affects anywhere from 25% to 40% of people with the condition.
By doing research into why people with TSC often have epilepsy, autism and tumor growth, the group can also make headway in understanding those associated diseases.
“There’s something about [TSC] that’s leading to a higher prevalence of epilepsy, autism, tumor growth,” Roberds said. “And if we can figure out what is causing that in TSC, we’re hopeful that would also allow us to understand something about how epilepsy, autism, and tumors might develop in people who don’t have TSC.”
That wide spectrum of how the condition renders itself is a large reason why the nonprofit, which celebrates its 50th anniversary next year, is pushing so hard for awareness and research.
Beebe said that nearly all friends and family, along with himself, didn’t know what TSC was until they learned Parker had it.
The Beebe family’s journey so far
When Parker was diagnosed with TSC before childbirth, Ryan and Andrea Beebe began to research the disease, realizing that it could affect Parker “very minimally” or it could “take over his life.”
“Not knowing where he would fall in that was the scariest part,” Ryan Beebe said.
Since TSC isn’t always the easiest to detect from the jump, some parents go months or years without realizing their child has the disease. His father is thankful that he and his wife learned before birth.
Around five months, Parker began to have “infantile spasms.” Because his parents knew to look for those spasms due to the previous diagnosis, they could report them as seizures to the doctors and make sure their son was safe.
Making sure others have the same awareness of these spasms as the Beebes did is one of the focuses of the nonprofit, said Roberds.
“What we really want is for people to understand the high potential for developing seizures so that they can be on the lookout,” Roberds said.
For Parker, TSC has had significant impacts both physically and cognitively, including an autism diagnosis at 3-and-a-half years. Beebe said that his son speaks only a couple dozen words consistently.
A new medical talking device that the family got earlier this year has helped his communication tenfold, whether it’s signaling what food he wants, which family member he wants to call or a movie he wants to watch.
“He does have behavioral issues, so sometimes he just wants to be by himself,” Beebe said. However, he said his son is a “super-loving kid.”
“He will give hugs to everybody. Loves hugs, kisses, loves playing in the water, being outside, playing with his older brother (Tyler).”
And for the Beebe family from Clayton, it’s affected not just Parker’s life. His father made a bold jump from his job in banking − which he had for 12 years − to joining the TSC Alliance team.
“Do I want to get into something more meaningful?” he remembers asking himself.
In 2020 and 2021, Facebook Live fundraisers called “Gettin’ Saucy with Parker B” each raised over $70,000 for the TSC Alliance.
And in April 2022, Beebe officially switched positions, motivated by the previous fundraisers he held for the nonprofit that connected him with the staff. The change gives him the chance to advocate for his son daily.
“I have not felt like I’ve worked,” Beebe said. “It really just feels like my job is advocating for Parker. I have not regretted the decision at all.”
Sunday will be another one of those days − advocating for his son and fundraising for the disease that affects him and countless others in the rare disease community.
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More about Dewey Beer
Dewey Beer opened its Harbeson location − just south of Milton − in May 2021 as a production facility and home base for brewing. Its other location is right in Dewey Beach, about a half-hour away.
Last year, the company opened Pizza Machine right next to its Harbeson location, giving customers an easy one-two punch for beer and food at the brewery.
Throughout the first two years in Harbeson, McCluskey said that the company has focused on becoming “community-oriented.”
The craft brewery has partnered with a handful of other nonprofits and foundations around the area, such as What Is Your Voice, a domestic violence service in Lewes, and the Surfrider Foundation.
This August, Dewey Beer will partner with the Brandywine Valley SPCA. McCluskey said that Dewey Beer takes good care of its employees so that tips can be donated to outside groups.
“We’re to have fun (along with) helping to build the community,” McCluskey said.
Contact Konner Metz at kmetz@gannett.com and follow him on Twitter @konner_metz.
