PHS grads raise funds for BFF at party

By Pam Hersh, Special Writer
   On June 8, a graduation party in the backyard of Andy and Carol Golden’s Princeton home featured the usual graduation party elements: dancing; singing; music; barbecued ribs; graduation gift checks; sports-related souvenirs; and a lot of hooting and howling from the friends and family members of seven PHS graduates, all sports enthusiasts (football, basketball, baseball): Zack DiGregorio, Lior Levy, Ellis Bloom, Elliott Golden, Scott Bechler, Christian Giles, and Jeremy Goldsmith.
   In spite of the usual graduation party characteristics, the gathering was, in fact, very unusual.
   The gift checks were in envelopes saying “Derek’s Dream,” rather than the names of any of the seven graduates. And the amount of the checks totaled a staggering $40,000.
   These seven extraordinary young men who graduated on June 20 transformed the usual hyper-narcissistic ritual called the graduation party into something unusually selfless — a fundraiser for their lifelong friend, 16-year-old Derek DiGregorio, who copes with a progressively debilitating, neuro-muscular, degenerative disease, called Ataxia Telangiectasia.
   The disease affects muscle control and compromises the immune system. Another usual/unusual fact is that Derek has exceeded the usual life expectancy for those with this disease, thanks perhaps to the unusual group of BFFs — best friends forever — “who have provided Derek with medicine you can’t bottle . . . They are Derek’s superheroes,” says Derek’s mom, Nadia.
   Derek’s dream is simply to be treated like everyone else, while maintaining his greatest level of independence and dignity, said his older brother Zack DiGregorio.
   The party as a fundraiser was just a way to further that dream by providing funds for equipment to keep Derek as mobile and independent as possible.
   ”My friends have always been so great with Derek and with making him one of us, so I think the idea of celebrating our graduation with a fundraiser and party for him just came naturally and spontaneously and everyone was immediately on board,” Zack says.
   The boys tackled the various fundraiser challenges like it was a Super Bowl or World Series game. They helped sell 250 tickets and solicit sports-themed auction items (all donated), including a pair of Super Bowl tickets; Giants at Eagles tickets; Eagles at Giants tickets; WWE Wrestling tickets; Red Bulls tickets; and CBS Production truck access during a PGA tour event.
   ”We are all so close with Derek and we knew that there would be plenty of other regular graduation parties so we thought why not have a fun party that can also benefit Derek’s Dreams,” Lior says.
   The PHS graduating BFFs have been a team since they were toddlers, and their bonds to one another and Derek are rooted in youth sports. Thus the activity, which recently has been maligned for abusive coaches and concussions, in this case should be hailed as a home run in Derek’s life.
   Derek’s Dad, Steve, known to all as “Digger,” was an assistant football coach at Princeton University under Steve Tosches. Since leaving Princeton, Digger has been a high school athletic director, teacher and football coach. Today he teaches government and is the head football coach at Nutley High School, where he and Nadia teamed up as a couple.
   The town/gown sports communities in Princeton have been the “village” that has allowed Derek to live his dream. The BFF team members take Derek to football and basketball games on and off campus; to exercise in the sports workout facilities; and to the Princeton University stadium climbing wall, installed specifically for physically challenged kids by Outdoor Action students.
   Last year at this time, Team BFF cheered wildly when Derek, at Princeton University’s Class Day, became an honorary member of the Princeton University class of 2012. The PU students were celebrating Derek for his steadfast loyalty and passionate attachment to Princeton University sports teams.
   Before Derek’s disease had progressed and when the diagnosis was a “probably ‘only’ cerebral palsy,” Derek’s own sports ambitions were blossoming. He became a world champion in Tae-Kwon-Do for his age group. And as his disease progressed he got involved in bowling and won a gold medal in Special Olympics bowling.
   Next year, in spite of the fact that the BFF Team members are headed in different directions, the boys are strategizing about how to stay connected to Derek. A couple of them have postponed college for a year, another is going to Princeton University, and the others who are attending schools some distance from Princeton are figuring out how to make Derek’s activities an important part of their time at home.
   Derek also has his younger brother Aaron who leads a younger group of BFFs who will take joy in hanging out with Derek and are planning on how to work on the second part of Derek’s Dream — the portion that goes beyond Derek himself. They have expressed a more global desire to attack the disease which is so rare (affects three people out of every million) by raising awareness in public and private funding organizations.
   ”These young people so genuinely care about the well being of someone other than themselves,” says Nadia. “They are doing what they do not to build a resume or to fulfill a community service course requirement. It comes from the heart…They are Derek’s Dream Team.”
A longtime resident of Princeton, Pam Hersh is vice president for government community affairs with Princeton HealthCare System. She is a former managing editor of The Princeton Packet.