If you are part of the greater Salisbury Middle School community, chances are you know the story of Adam Recke.

Son of Technical Education teacher Sean Recke, Adam suffers from a rare disease known as Niemann-Pick Type C1 (NPC1), an inherited metabolic disease. There are around 200 cases in the United States, 500 worldwide.

Over the years, a number of events with an SMS connection have been held to help support the Reckes in their fight to raise research funds and awareness of this rare disease.

Last month, SMS held a number of events in support of their teacher and his family. From selling pretzels to a dodgeball tournament, faculty, staff and students got involved to spread the word of Adam’s fight.

SMS Language Arts teacher Kara Bellis and Math teacher Meredith Castagna organized this year’s events.

Bellis explained to The Press, “The Recke family is such a truly amazing family. They work tirelessly not only to help Adam, but also to help other families facing similar hardships by fundraising, working with researchers and raising awareness.

“Adam himself is such an inspiration. In my mind he’s the definition of resilience and perseverance; he’s been fighting from such a young age and continues to be a beacon of hope for others in similar situations.

“Raising awareness within our school and our community is the least we can do to help this family. Students are eager to help as they find value in becoming a part of something bigger than themselves. Many of them enjoy giving back to someone (Mr. Recke) who gives to them on a daily basis.”

Recke sat down with The Press back in March when the school was in the middle of holding the pretzel fundraiser. He spoke about Adam’s fight, NPC and the community support over the years.

“Adam was diagnosed with NPC when he was six years old,” Recke said.

The diagnosis was not immediate.

“It took us six years to get a diagnosis. When he was born, he was jaundice. We tried to figure out what was going on and the doctor kept saying don’t worry about it. It’s not a big deal, just put him in the sun,” Recke explained.

He continued, “After our third visit to the doctor, he said maybe we should draw some blood. We got the results and he said ‘you need to go down to St. Christopher’s tomorrow.’ We had no idea what was going on. We were unsure of everything at that point.

“They misdiagnosed him with neahyda hepatitis. Sent us back home and everything was going great. His liver was enlarged at that time but they gave him vitamin K and his liver went back down to somewhat normal size. But then his spleen became enlarged.”

Six years and multiple visits later, Adam was diagnosed with NPC. “It was the hardest words we could have ever heard,” Recke said.

“I just knew it was a horrible disease with no cure.”

What is NPC?

“In everyday language, inherited means that individuals with NPC disease received two defective copies of the NPC1 gene at conception: one from mom, one from dad. The metabolic aspect indicates that cells within an NPC individual cannot properly process cholesterol and other lipids. Similar to what happens with an overflowing trash can, things run amok. As cholesterol accumulates in the cell’s lysosome, the cell loses its ability to function properly and eventually dies,” Cristin Davidson explained during an interview with The Press March 29.

“What’s more, NPC disease has an obvious neurological component which progressively gets worse as NPC individuals age. For example, a seemingly normal child may start to become clumsy or fall behind their peers in school. These little mishaps will continue to become more pervasive as the child ages and it may take several years for a clinician to diagnose NPC disease. In large part, this is due to the rarity of NPC as it affects one in 100,000 live births.”

Davidson is the project manager for SOAR (Support Of Accelerated Research for Niemann-Pick C).

The organization’s main goal is to promote any promising therapeutics in an effort to become clinical trials. She has known the Recke family for years. As she explains, the bond between the advance of research and the strong relationship with affected families is a key toward helping advance the cause to find a cure.

“Over the years, NPC families have come together and formed groups to focus on various unmet needs in the community. The Reckes are part of one such group known as Support Of Accelerated Research for Niemann-Pick C, or SOAR-NPC. The overarching goal of SOAR-NPC is to rapidly advance any promising therapeutics into clinical trials. This highly collaborative group consists of two major units: first, family foundations that fund therapy-driven research and second, several NPC researchers who pursue these preclinical studies.”

The Recke family became part of SOAR years ago after going to a medical conference in Arizona.

“We met some families out there (Tucson) when Adam was still younger and didn’t show any signs. Some of the fathers that I met with pulled me aside and said we need to talk. We’d like you to join our group, it’s called SOAR,” Recke said.

Davidson told The Press, “Families supporting SOAR-NPC raise money from within their communities and fund projects aligned with pursuing therapies that can help NPC individuals alive today. In turn, the researchers within the SOAR Collaborative work diligently to evaluate a wide variety of therapeutic avenues in hopes of finding one or more that will impact the disease course.

“The families and researchers interact on a regular basis and each drives the other to work harder. NPC families have an inside look at how research is performed, what some of the bottlenecks are, and how expensive each study can be.

“On the other side, researchers have a front-row seat to the complicated lives of NPC individuals and heartbreakingly, witness their gradual decline in real time right along with the families. Each member of the SOAR-NPC group feels the intractable need for progress and deals with frustrations ranging from crossing yet another potential compound off the list to disheartening interactions with regulatory agencies to losing sleep at night wondering what, if anything, will make a difference in this horrendous disease.”

“It’s a horrible disease and people say you must be strong. It’s what we were given. We didn’t have a choice. We have to fight every day for him and I will continue to fight every day for him,” Recke explained.

“We are actually trying to find a company that’s a local company that has another delivery method for the medication that he’s getting now that could be better,” Recke continued. “We are trying to get them involved with our research as well.”

Most NPC patients are not expected to live past their teenage years. It is rare for someone to live past 20 years old. Adam turned 24 March 25. The disease is progressing and he recently had his 158th spinal tap.

Recke is quite open with his students about Adam’s struggles.

“I tell them that he (Adam) has a terminal disease, Niemann-Pick Type C. I explain that it’s like Alzheimer’s, dementia, Parkinson’s. If you can imagine all those wrapped into one.”

“It’s tough to talk about because he’s such a happy kid. He never complains.”

It’s important to Recke for the community to understand NPC.

“It’s a tough disease. We fight every day and we just need to let everybody know that there are diseases out there that don’t have any therapies or cures. We are going to continue to fight,” Recke said.

Davidson has a message for the Salisbury community.

“The Reckes have been invaluable contributors to SOAR-NPC’s efforts since shortly after its inception in 2007. From participating in motorcycle rallies to golf tournaments and silent auctions, the local community has stepped up to support the Reckes and their unwavering confidence in the SOAR-NPC effort to find treatments for NPC individuals alive today. For this, the global NPC community is eternally grateful.”

If you wish to learn more about SOAR and would like to somehow reach out and help this cause, visit raceforadam.org or contact Sean Recke at SMS.