Sickle cell patient Ben Duvelson says the Valerie Fund has been "vital" as he manages disease
MAPLEWOOD, N.J. -- The Valerie Fund helps 6,000 kids a year in their battles with cancer and blood disorders, and they're hoping to raise $1 million at their walk and 5k run this weekend.
Earlier this week, CBS2's John Elliott met one of the warriors they've helped.
Ben Duvelson is a senior graduating from Union High School and will be attending Princeton University in the fall.
"Ben is what we call in Brooklyn a stand-up guy," said Valerie Fund education liaison Donna Frasca-Brady.
Ben has been standing up to sickle cell disease with the help of the Valerie Fund since he was 8 months old.
"Sickle cell disease is a chronic condition that leads to several complications, including anemia, that patients live with all their life until it's cured," said Dr. Shalu Narang, with Children's Hospital of New Jersey at Newark Beth Israel Medical Center.
"What kind of a toll does it take on their lives?" Elliott asked.
"Oh, a very heavy toll," Narang said.
"It's very real. Something is happening inside our bodies," Ben said. "Just 'cause you can't see it on the outside, kinda look fine, doesn't mean I actually am fine ... The pain episodes are very bad, and they can kind of derail your life."
"Ben has totally made his mess his message. He's taken something he's had no control over and refused to let it bring him down," Frasca-Brady said.
"You never know what someone else is going through. In fact, a lot of sickle cell patients deal with that," he said. "Sometimes you gotta dig deeper and see what's really going on with us."
"Ben, in his darkest days, makes you feel better about yourself and makes you want to be a better human being," Frasca-Brady said.
"I try to look at what I've gained from dealing with this, things it's taught me about being able to overcome challenges, and I think that's definitely helped me as I tackle all types of problems," Ben said.
"How vital has the Valerie Fund been to you as you manage this?" Elliott asked.
"Very vital," Ben said.
The Valerie Center at Newark Beth Israel opened 38 years ago, and while the priority has always been healing and helping kids battling cancer and blood disorders, the mission of the Valerie Fund encompasses so much more.
"The core message and motto of the Valerie Fund is to treat the whole child," Frasca-Brady said.
"They provide social workers, educational liaison, integrated medical specialists, psychologists; all of those people are needed on my team to manage someone with sickle cell disease and I thank the Valerie Fund for that," Narang said.
"You have to take care of your health, but you want to live your life as well," Ben said.
Elliott and Vanessa Murdock will be hosting the walk this Saturday. The Valerie Fund says they have been monitoring the air quality to ensure the safety of participants, and as of Thursday, the event is expected to continue as planned.