The Solomon Schechter Day School of Greater Monmouth County in Marlboro was among the schools and organizations that conducted bone marrow drives for Marc Weinstein, who is a fourth-grade student at the school. Photo courtesy SSDS of Greater Monmouth County
March 04, 2008
Hundreds of Monmouth County residents participated in bone marrow drives last month in hopes of finding a match for Marc Weinstein, a nine-year-old Morganville boy who suffers from hemophagocytic lympho histiocytosis (HLH), a rare auto-recessive genetic disorder that affects approximately 1.2 out of one million newborns.
And while the results of the recent drives are being culled for a possible match that could result in a bone marrow transplant that may save the fourth-grade student’s life, Marc and his parents, Barry and Cindy, continue to wait — and hope.
Marc’s school — Solomon Schechter Day School of Greater Monmouth County in Marlboro — the Marlboro Jewish Center/Congregation Ohev Shalom, Temple Rodeph Torah in Marlboro, and the Jewish Federation of Monmouth County in Deal organized separate bone marrow drives throughout February in an effort to find what the Weinsteins are calling a “miracle match” for Marc.
The testing process will take several weeks, said Barry Weinstein.
“It’s a waiting game, and obviously the stakes are very, very high,” Weinstein told NJ Jewish News. “But we’ve exhausted all the other treatment options, and Cindy, myself, and Marc’s medical team agree that a bone marrow transplant is now the only way we can try and save his life.”
In addition to organizing and participating in the bone marrow drives, members of the county’s Jewish and general communities have shown their support in a variety of ways that have helped the family endure some dark days, Weinstein said.
Prior to the drives, many people from throughout the county had already ordered home testing kits from the Gift of Life Bone Marrow Foundation, which is North America’s largest Jewish marrow donor and umbilical cord registry, he said.
“Many on Marc’s ‘miracle team’ have put aside their jobs and their daily responsibilities to raise funds, organize and conduct the drives, and hand out flyers on our behalf,” said Weinstein. “How can we even begin to thank everyone for their unbelievable contributions and efforts? They have done so much themselves and have also inspired others to take up the cause.”
Publicity on Marc’s behalf, including media coverage, e-mail alerts, and mailings, has traveled well beyond Monmouth County. People throughout New Jersey, New York, Florida, Illinois, Michigan, Maryland, New Mexico, Pennsylvania, and Texas have either acquired home testing kits or participated in bone marrow drives on the boy’s behalf.
Inquiries also have been received from citizens and organizations in Israel, Weinstein said. And although the number of those who participated in the February drives is still being tabulated, more than 1,500 individuals have been tested since January and have been added to the National Bone Marrow Registry, he said.
Marc’s illness is not the first time his family has coped with HLH. His younger brother, Ross, died from the disorder shortly before his second birthday in 2002. Ross was diagnosed before Marc, who received his HLH diagnosis when he was 14 months old. (Robby, Marc’s four-year-old brother, does not have the disorder.)
Hundreds of members of Monmouth County’s Jewish and general communities have participated in bone marrow drives for Marc Weinstein, nine, of Morganville. Photo courtesy Barry Weinstein
“We’ve seen the worst of what this can do, but we’ve seen the best aspects of human nature,” said Weinstein. “We know that each donor tested is a potential blessing to someone in the world. Although many have expressed a wish to be Marc’s miracle match, it is entirely possible that other lives will be saved thanks to the efforts of everyone involved. We are so grateful that Marc’s life has touched so many.”
Since his diagnosis, Marc has undergone blood tests, injections, other diagnostic tests, and medicinal therapy in an effort to monitor and contain the disease. But while some of the medications modulated his immune system, others triggered the HLH. On at least one occasion, Marc’s temperature rose to 107 degrees, and last fall, he suffered a life-threatening seizure. Chemotherapy and immune suppression and anti-seizure drugs have helped bring the HLH under a semblance of control until the miracle match is found.
“Marc’s doing okay right now,” Weinstein said. “He’s in a kind of holding pattern, but overall, he’s doing well and his spirits are good. He never complains, so we follow his lead and are extremely optimistic that a match will be found shortly. I think his miracle match is out there. But only time will tell.”
Additional information about Gift of Life is available on-line.
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