The Recke family in May 2013, taken at Moravian College: (l-r) Adam (14), Sean, Katie (16), Josh (19) and Amy. Below, Adam joined the bands on stage at this year's ride. Photos provided by Amy Recke.
By Danielle Tepper
Adam Recke is a typical teenager. He loves music, hanging out with his friends, watching sports on TV, and is very excited to be attending Freedom High School as a freshman. According to his parents, he’s a “super happy kid.” Hiding behind Adam’s bright smile, however, is a disease that’s slowly robbing him of a normal adolescence.
In 2005, the week after Adam’s sixth birthday, he was diagnosed with an incredibly rare and terminal illness called Niemann-Pick Type C. For a disease to be considered “rare,” it has to affect less than 200,000 people in the United States. Right now, NPC affects just 500 people in the entire world, five of whom live in Pa. Nicknamed “childhood Alzheimer’s,” NPC inhibits the metabolism of cholesterol and other lipids. Excessive amounts of cholesterol therefore accumulate in the liver and spleen, while other lipids accumulate in the brain.
Adam’s symptoms began when he was only two weeks old.
“There was just something not right,” said his mother, Amy Recke. He was jaundiced, which she said “started the whole thing.” As he got older, his balance was off when he walked. He had an enlarged liver and spleen, which prompted his pediatrician to confirm that he had a cholesterol storage issue. Unfortunately, because the symptoms in affected kids can be so varied, it makes NPC diagnosis difficult to pinpoint.
“Generally, it takes six years to get diagnosed and by that time, most children are too far along with the disease,” said Adam’s father, Sean Recke.
After word of Adam’s diagnosis spread throughout Salisbury Middle School in Allentown where Sean worked as a technology education teacher, the Race for Adam Foundation came together less than a year later.
“When I had to go in and tell the principal about the diagnosis, that was tough,” said Sean. “The assistant principal then told some people and they said they just had to help out. Matt Tobias, the president, got everything going with the nonprofit. It started with a few other people and they just got the ball rolling for us.”
Through various fundraisers, the foundation aims to raise at least $50,000 for the Reckes each year, which they then combine with the three other families they work with to hand over a grand total of $600,000 to researchers. They’re able to actually sit down with the researchers and discuss the progress being made toward earlier diagnoses, finding treatment, and hopefully someday, finding a cure.
“They tell us what’s in the future, what we should be funding, what we should be looking for, and because of what we’re funding, they’re able to start clinical trials,” said Sean.
Their focus is put on finding things that work that have already been approved by the Food and Drug Administration (FDA), because to try something experimental would be an impossible feat:
“We were told it would take between eight and 10 years and a billion dollars to save him,” said Sean.
Right now, they’re exploring cyclodextrin, which is a cylindrical sugar molecule that can be found in peanut butter, toothpaste, and Febreze. The cholesterol fits into the center of the molecule and is excreted from the body before it can become stored in the organs. It is effective in prolonging life, but researchers aren’t exactly sure why it works yet.
Sean explained, “When the researchers say, ‘ooh, this looks promising,’ we say okay, how much money do you need to fund that? And that’s what we do.”
Most of their money raised goes toward SOAR (Support of Accelerated Research), which includes working with TRND (Therapuetics for Rare and Neglected Diseases).
Since its inception, the Race for Adam Foundation has organized countless fundraisers in Adam’s name, but easily their biggest of the year was actually started by just one man who was touched by Adam’s story.
Casey Stengel (of W. Casey Stengel Trucking, Inc.) heard about Adam through Greg Laub, who happened to work with Sean at Salisbury Middle School. They met at a restaurant event in the Lehigh Valley Mall with the Philadelphia Phillies, which was thrilling, of course, for sports fan Adam.
“We saw Casey with his shirt ripped off, you know, sort of intimidating,” Sean laughed. “And he said to us, ‘I’m gonna make a few phone calls and I’m gonna knock your socks off.’”
Stengel thought he spoke too soon. “I really put my foot in my mouth,” he said. “I didn’t know what the hell I was gonna do.”
He shared Adam’s story with the biker community and was amazed at the response. In 2006, they organized a ride in Adam’s name and asked for donations. Thus the Ride for Adam was born. The turnout was unlike anything they could have predicted.
Adam used to lead the motorcade from Schnecksville Community Fire Company in a 1967 GTO convertible, but he's been lucky enough to hitch a ride in a sidecar over the past few years. Below, Adam took the stage with the Armadillos. Photos provided by Amy Recke.
“You heard this roaring from over the hill and the bikes just kept coming and coming,” said Stengel. They raised approximately $26,000 that first year with 400-500 motorcycles and a generous private donation brought them up to around $32,000.
“It’s grown immensely since then. I don’t think there’s a ride bigger than ours,” said Amy. “Casey and his friends are like family to us now.”
“It’s amazing,” added Sean. “After that first ride, I said, ‘Casey, you did it!’ and he said, ‘Wait, your pants are coming next.’ All the supporters that donate and give stuff to us every year … it’s unbelievable.”
The Ride for Adam Committee prepares all year for this one-day event. The ride is responsible for raising $30,000-50,000 for the foundation each year, most of which comes from $25 ticket sales. Hope Reiss of Reiss Cycle, LLC (who sponsored this year’s first-ever fireworks display) said she markets the event to people by simply laying it out.
“Your ticket buys you beer, soda, water, lunch, dinner, five live bands and fireworks,” she said. “Where else can you get all that for $25? It’s entertainment, food, fun, and friends, and it’s all to help this sick kid.”
Saturday, August 17 was the seventh annual Ride for Adam. After a brief opening ceremony, Adam yelled, “Start your engines!” at noon and the field next to the Schnecksville Community Fire Company Pavilion exploded with the sound of approximately 900 revving motorcycles.
“Adam absolutely loves going for the ride,” said Reiss. “He’s out front leading the pack.”
The two-hour cruise is a 50-60 mile escorted route through rural Lehigh County. The streets were lined with waving neighbors and honking cars, as they all watched the seemingly never-ending line of motorcycles pass through.
Attendance actually suffered a significant drop compared to last year, but that didn’t dampen Adam’s spirits.
“It was just so much fun,” said Amy. “He was up on stage with the band yelling, ‘One more, one more!’ I had to go get him down. He absolutely loves getting up there with those bands and having a ball. He looks forward to this.”
“It’s an amazing day and one of those days where it just feels good to be a part of it,” said Reiss. “When you see Adam’s face, you know you’ve done good.”
Reiss said she and her husband Brad didn’t hesitate to get involved when they heard about Adam and the struggles he and his family were enduring.
“Here you have middle America. They’re not on welfare and they’re not millionaires. This man works in our school district and teaches our children and nobody’s helping him? Are we crazy? Why aren’t we taking care of our own? That’s what really fired me up,” said Reiss. She also added, “It’s not fair. That’s what made me sad. It broke my heart that Sean and his wife are such nice people and were living a normal life until this happened and what do you do?”
Reiss and the rest of the Ride committee are determined to raise as much money as possible each and every year for Adam. This year’s grand total was $42,000.
The ride has also been spreading awareness, something Sean said is their biggest hurdle besides raising money. It’s his hope that they can continue to enlighten people who have never heard of NPC.
“With it being so rare, we don’t get a lot of media attention,” he said. “If you would say cancer, everybody wants to help out. If it was cancer, we’d have hope. And right now, there is none and that’s what makes it even worse. But we keep trying.”
The Reckes look to their son’s bright smile to keep them going.
“To see Adam smile every day is a joy. To know that he’s enjoying life every day, we get to enjoy it with him,” said Sean. “And to see how much we’re pushing the research and we know they’re working hard for us. What we do and what we’re funding is for all the kids, it’s not just to help Adam. We know what we’re funding is good enough to help them. If it doesn’t work for Adam, maybe it will help other families in the future.”
To learn more about NPC, go to www.nnpdf.org.
To donate to the Recke family, please visit www.raceforadam.org.