By Victoria Hurley-Schubert, Staff Writer
The family of an eighth grader with a rare genetic disorder is the beneficiary of the 38th Annual Longbeard Contest at the Alchemist & Barrister.
Derek DiGregorio, who lives with his family in the township was born 14 years ago with a disease that will eventually rob him of movement, compromise his immune system and may cause cancer, but only received the correct diagnosis a little more than a year ago. He suffers from ataxia telagiectasia (A-T).
A-T is a progressive, rare genetic disease that affects about 600 Americans. The disease attacks children. Both parents need to be carriers for the disease to strike.
There is no treatment or cure for the disorder, said Steve DiGregorio, Derek’s father.
”This disease compromises the kid’s immune system to the point they can’t be X-rayed and they are susceptible to cancer,” he said. “You have the worst of two worlds combined.”
Many of the deaths related to the disease are caused by leukemia.
An eighth grader at John Witherspoon Middle School, Derek is the middle child, with younger brother, Aaron, 13, in sixth grade and older brother, Zack, 16, a junior at Princeton High School. They do not have the disorder.
The middle DiGregorio son was born in 1997. After noticing an irregular gait in Derek’s walking at about age 13 months, his parents were told he had cerebral palsy.
When his son’s walking issues never improved and other symptoms, such as extreme fatigue, worsened, his parents pursued answers with other doctors.
”It was like he started the day with a full tank and it emptied very quickly; your body is working so hard to right itself and make all these adjustments and it leaves you exhausted,” said Mr. DiGregorio. “It wasn’t until we hit the eighth neurologist, we got the diagnosis when Derek was 13 years old, and it was something we had never heard of.”
”Once we got the diagnosis from the Children’s Hospital in Philadelphia, we then set up an appointment with the A-T clinic at Johns Hopkins,” said Mr. DiGregorio, an American history and government teacher at Nutley High School and a former football coach at Princeton University. “It was at Johns Hopkins we got the official diagnosis.”
The largest A-T clinic is at Johns Hopkins.
Derek’s ability to walk has been compromised and he uses a wheelchair.
”He can negotiate around our house, but anything more than that, such as the school hallways, requires a wheelchair,” said Mr. DiGregorio. “We travel with his wheelchair all the time.”
The family home will eventually need to be made wheelchair accessible as the teen needs to rely on it as the disease progresses. For now the he still negotiates the stairs in the house.
”He’s so tough,” said his father. “He wants to hang onto his independence for as long as possible.”
Before the disease progressed and was accurately diagnosed, Derek was very active in Tae Kwon Do as a form of exercise and therapy.
”His spirit is abominable,” said Mr. DiGregorio. “He does the best he can with stuff, but he is much more limited.”
Derek likes video games and plays with his brothers and friends and likes to listen to books on tape. Reading is an issue because the disease has affected his eyes, limiting optical movement.
The disease is slowly robbing his son of the little things.
”Holding a pencil or a cup to drink is so more challenging for him,” said Mr. DiGregorio.
”He’s aware of everything. I’ve never heard him complain. That’s what makes him so remarkable,” said Mr. DiGregorio. “He’s been to so many doctors, stuck with so many needles, he just puts his head down and goes.”
Derek does physical therapy to maintain what functions he can. He loves to swim in Community Park Pool with his family and friends.
A lifelong animal lover, Derek has an Irish shepherd[cki: : ] named Angel and a goldfish.
”Since he could talk he has told us he wanted to be a veterinarian,” said Mr. DiGregorio. “He’s never changed from that, he’s a huge animal lover.”
Some of the DiGregorio’s friends created Derek’s Dream, a group dedicated to raising awareness about the disease and resources to help the family.
The Princeton Borough Police and the staff at the Alchemist & Barrister wanted to help a local child this year, and put the word out that they were looking for a family to support with the annual Longbeard contest. Among the suggestions, the DiGregorio family stood out, said Princeton Borough Police Chief David Dudeck.
”I found out he had been a football coach at Princeton University several years back and I heard he stopped coaching football to give more time to his son,” said Chief Dudeck, who met Mr. DiGregorio years ago through coaching. “I reached out to the secretary and staff and I heard so much about how this family gives to everyone else that I thought it would be nice to give to them. We get to help a local family that is dealing with a disabling disease in a positive way.”
The family, who moved to Princeton Township in 1995 when Mr. DiGregorio was coaching at Princeton, is humbled by the community support.
”This is all very sudden for us,” said Mr. DiGregorio. “I think I spoke to Chief Dudek last week; we are very humbled by this and thank the community and Chief Dudek for selecting Derek.”
Money raised by the Longbeard contest will be earmarked for some of Derek’s future needs as the disease progresses.
”We want to make his life as easy as possible when it’s not easy,” said Mr. DiGregorio. “We want to make it as easy as possible for him.”
For the Longbeard contest, clean-shaven men registered this week and donated $25 to participate in the beard growing contest. Throughout the contest, the Princeton Borough Police and the Princeton Township Police will be trying to out fundraise each other.
”I was really happy (the Alchemist & Barrister) asked us to be involved,” said Chief Dudek.
He and the restaurant are reaching out to Princeton Township Police and Princeton University Athletic Department to help raise awareness and funds for the family.
”I thought that it would be nice in this time of consolidation that the three major organizations involved are coming together to help this local family.”
Since Princeton Borough Police raised the most money for last year’s charity, they were given the honor of helping to choose this year’s recipient, said Debbie Fasanella, wine and spirits director at the Alchemist & Barrister, who organizes the annual contest.
The Alchemist & Barrister plans several fundraising events between February 22 and their St. Patrick’s Day celebration, including players from the Eagles and local athletes, coaches and staff from Princeton University’s athletic department, said Ms. Fasanella. Each week, guest bartenders will serve in the Witherspoon Street pub and donate earnings to the fund. Both local citizens and Princeton’s top mixologists will be behind the bar.
The winner of the Longbeard Contest will be the man with the longest facial hair, which will be measured at the restaurant’s St. Patrick’s celebration.

