Bristol’s Andrew Coppola Foundation will host third Kick the Pick event to raise awareness of Neimann Pick Type C Disease
By Samantha Bambino
The Times
Andrew and David Coppola were just your average boys. They played Little League baseball, hung out with friends and stressed over acing their driving tests. But all of that changed in 2010 when Andrew was diagnosed with Neimann Pick Type C Disease, a rare disorder that left him battling seizures and struggling to walk. David was diagnosed two years later.
To raise awareness of this debilitating disease, the Bristol-based Andrew Coppola Foundation is hosting its third annual Kick the Pick event on Saturday, Feb. 24, from 7 to 11 p.m. at the Hilltop AA in Oakford. All proceeds will benefit the foundation, whose mission is to help find a cure for Neimann Pick Type C (NPC).
Though their lives now revolve around the disease, the Coppolas were unaware of its existence for 16 years. It was during the summer of 2010 that NPC reared its ugly head. The family was enjoying a normal vacation at the beach, something they did every year, except Andrew wasn’t acting so normal.
“It was like someone gave him a bad drug,” his father Brian said.
Andrew was convinced he knew total strangers on the boardwalk, amongst other uncharacteristic behaviors. Brian, along with Andrew’s mom Kim, were worried. Once home, they immediately took their son to the Children’s Hospital of Philadelphia to figure out what was wrong, but to no avail. CHOP recommended them to Foundations Behavioral Health in Doylestown, which specializes in mental health services. Still, the Coppolas left with no answers.
“We went through hell for a month trying to figure out what was wrong,” Brian said.
When Andrew suffered from his first seizure in September, that was the last straw. His parents brought him back to CHOP, this time refusing to leave until they understood what was wrong with their son. Finally, they received an answer — Neimann Pick Type C.
The Coppolas learned all they could about this ultra rare disease, which causes cholesterol to store up at the cellular level. The cholesterol packs into lipids and organs, including the brain and central nervous system, and the person is unable to get rid of it.
Though the Coppolas were told there were hardly any other NPC diagnoses in the region, Kim discovered this wasn’t the case. While at home one morning, she happened to turn on a talk show with Hota Kotb. The guest that day was a boy named Adam. He was about Andrew’s age and, as fate would have it, living with Neimann Pick Type C. He was also from Bethlehem, which in the grand scheme of things, isn’t far away at all.
While he certainly had his struggles, Adam was living day-to-day with the disease. Kim knew the same could be true for Andrew. Within two years of his diagnosis, the Coppolas solidified a helpful medicine and hired an aide to visit the house regularly. The family was successfully adapting to this new situation, taking things one day at a time. But life was interrupted once again when their younger son David was diagnosed in 2012.
“He was showing no signs at all,” Brian said.
David was top of his class at Calvary Christian Academy, a star football player and normal teen excited to get his driving license. Out of the blue, he began suffering from tremors, which caused his body to tense up. After David had a seizure, his parents knew what was wrong even before the doctors told them.
They learned that both of their sons were born with the disease, which manifested itself later in life. Brian explained how a late onset is actually better. When symptoms occur early, they include extended livers and jaundice, and many children don’t live past the age of 4.
But even for teens and young adults who have a higher mortality rate, catching NPC early is extremely difficult since each individual case is different. Even though they’re brothers close in age, Andrew and David are like night and day. While David has more issues with his organs, Andrew suffers from neurological symptoms such as having trouble walking and drinking clear liquids.
Though having two children diagnosed with this life-altering disease isn’t what any parent signs up for, the Coppolas are making the most of the situation.
“Things have become common,” Brian said. “We’re living with it, we’re dealing with it, helping every way we can.”
To promote awareness and help other families catch the disease as early as possible, Brian and Kim became active members of the Neimann Pick community and formed the Andrew Coppola Foundation in 2013. Since its creation, the Coppolas have established a number of initiatives to inform their Bristol community and beyond about NPC, including the Kick the Pick fundraising event.
Now in its third year, the event includes live music, prizes, raffles and a 50/50. According to Brian, Kick the Pick always takes place in February to align with National Rare Disease Month. All proceeds from the event will go directly to the foundation and Neimann Pick community, which is on the verge of having the first drug exclusively for NPC patients approved by the FDA this September.
Until then, Brian and Kim will continue to support their sons and help them thrive. Right now, Andrew works at a local TJ Maxx in Oxford Valley two days a week, while David earns some money at the Giant in Levittown.
“We’ve been through the wringer,” Brian said. “But we’re still coming out on top.” ••
If you go…
Kick the Pick will take place Saturday, Feb. 24, from 7 to 11 p.m. at the Hilltop AA, 4100 Grove Ave. in Oakford. Tickets are $30 per person, or $50 per couple. Cost includes food, beverages, beer, wine and coffee. Tickets are available online at kickthepick.com or at the door.
Samantha Bambino can be reached at [email protected]
