Ethan Greenstein is a blue-eyed, tow-headed 3-year-old who loves swimming, his stuffed frog and playing with his big brother and baby sister.
He also was diagnosed as an infant with a rare condition, Sturge-Weber Syndrome, a potentially debilitating vascular disorder whose primary symptom is epilepsy. Doctors have classified his case as hard to manage, and, in addition to various physical therapies and hospitalizations, he endures a rollercoaster ride of new medication cocktails and dosages to try to keep the seizures at bay.
His parents, Faith and Marc Greenstein, have established the Greenstein H.O.P.E. (Help Overcome Pediatric Epilepsy) Fund at Saint Barnabas Medical Center in Livingston to raise capital for equipment, to provide support for families whose children have epilepsy and to educate medical professionals treating those children. Ethan's preschool in Livingston, The Early School of Temple B’nai Abraham, is sponsoring a walk-a-thon in May to support the charity in his honor.
“It Doesn’t Happen”
When Ethan was born, he had a birthmark on his forehead that was eventually diagnosed as a port wine stain. Though these kinds of birthmarks can be a hallmark of Sturge-Weber Syndrome, the Greensteins were assured by physicians that there was no reason to be concerned as the condition is so rare.
They were told, “Don’t worry about that – it doesn’t happen,” Faith recalls. So they began laser treatments to reduce the birthmark.
Then at 6 months old, Ethan had his first seizure. He was hospitalized for 10 days, and an MRI confirmed the Sturge-Weber diagnosis.
Ethan is under the care of Sturge-Weber specialists at Johns Hopkins University, but his seizure treatment and hospitalizations have all been at Saint Barnabas Medical Center. Though medications were minimizing his seizures for a while, a different type developed in another part of his brain. They have proved tough to get under control through new drugs and dosages, each with its own side effects.
“As all the neurologists will tell you, seizure management is an art, not a science,” Faith says. “Everything’s slow. It’s always trial and error.”
Seizures can be triggered by a bump on the head, a fever or fatigue – three things that can be hard to avoid now and then as a toddler. There is a predisposition for glaucoma, and Ethan’s eye health must be monitored closely. His fine motor skills are affected, and due to the impairment of his left side, Faith says, “he’s got to be right-handed whether he was destined to be or not.”
Yet to see Ethan, one would never suspect something was wrong. “That’s the good and bad,” Faith says. “It’s good because you don’t want people to look at your kid funny. You don’t want them to question things. But on the other hand, when you’re going through a crisis, sometimes people don’t get it, don’t get the serious nature of things, because he looks ‘normal.’”
Marc adds that the seizures are the hardest thing to cope with as parents. “The port wine stain is cosmetic,” he says, and Ethan has not had problems with glaucoma. “The seizures are devastating.”
Reaching Out and Helping Others
The idea for starting a charity stemmed from Marc’s attending an annual gala benefiting FACES – Finding a Cure for Epilepsy and Seizures – through New York University. With Faith’s father, they coordinated a golf-outing fund-raiser that raised money for the Hunter Nelson Sturge-Weber Center at the Kennedy Krieger Institute of Johns Hopkins in Baltimore, Md. “At the same time we said that we should do something locally here,” says the Short Hills resident.
They opted to broaden the scope to pediatric epilepsy as it affects a larger portion of the community. Because Marc is a urologist, they are well-versed in the health-care world and how it functions, both from medical and logistical perspectives.
“We’re dealing with something that’s awful,” Marc says, “and because of who we are and because of what Faith and I can do, we said we should probably do something good for this and help out other people who don’t have the resources that we have.”
The Greenstein H.O.P.E Fund was born, and it launched in 2009 with a medical lecture where attendance was standing room only.
Last year the fund sponsored a “family fun day” at Turtle Back Zoo in West Orange for children with epilepsy and their families. Tori Weinstein, director of operations and grants at Saint Barnabas Medical Center Foundation, said the event was a huge hit.
“We got to see the moms and dads and kids in an obviously non-clinical setting,” she says, adding, “It gave the parents an opportunity to connect. That’s really what Marc and Faith are about – building support and community around families like theirs.”
The fund recently purchased headpieces that can be used in the hospital for short-term electroencephalograms, eliminating the need to glue leads to the children’s heads for the test.
“It makes it quicker and a lot less uncomfortable,” Weinstein says, adding, “The physicians are thrilled. The parents are thrilled. The kids probably don’t know what they’re missing but they’re happy.”
The Greensteins also are starting a support group facilitated by a social worker.
“They’re doing great things for other people, and they don’t have to do that given the situation that they’re in,” Weinstein says. “And that’s what’s so remarkable. They’re really special. Not every family would be as selfless and concerned for others as they are.”
Walking For a Cause
Ethan has been attending The Early School of Temple B’nai Abraham for the past two years. He previously had an aide to shadow him, but this year he has been thriving on his own with just a little extra supervision.
“Everyone always asks, ‘Aren’t you nervous with him running around and not being on top of him?’ And I say, ‘Yes, it’s terrifying,’” Faith says, adding, “That’s the risk we have to take to let him live the fullest life that he can and to let him stay as innocent and naïve to what’s going on.”
The school chooses three charities to raise money for each year, and it will host a walk-a-thon for the students on May 12. The children will be sponsored with donations ahead of time, and all proceeds will benefit the Greenstein H.O.P.E. Fund.
Early School Director Debbie Aronson Ziering says the event is something that even the youngest children can participate in, and it’s a unique opportunity to help one of their own.
“We’re teaching the children about tzedakah [charity] and giving to others,” Ziering says, adding that the walk-a-thon reaches “families and parents who now have a personal connection … [Ethan’s experience] brings it close to us.”
For the Greensteins, the event and the fund provide a chance to do something good for others in their situation.
“He has something that’s going to affect him and affect us for the rest of his life,” Marc says. “We just felt it was a good thing to do to help us, help others and even help him.”
To learn more or to donate to the Greenstein H.O.P.E. Fund, visit www.saintbarnabasfoundation.org/hope/index.html or call (973) 322-4330.