Marc Weinstein, nine, of Marlboro, needs a bone marrow transplant to survive his HLH immune system disorder. Photo courtesy Barry Weinstein
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Gift of life.February 19, 2008
Local Jewish institutions have joined a county-wide effort to save the life of a nine-year-old boy.
They organized bone marrow drives for Marc Weinstein, who suffers from a rare auto-recessive genetic disorder that has already claimed the life of his younger brother.
Marc, who will be 10 on March 25, suffers from hemophagocytic lymphohistiocytosis (HLH), which affects approximately 1.2 out of one million newborns. The only cure, say his parents, Barry and Cindy Weinstein of Morganville, is a bone marrow transplant.
Marc’s younger brother, Ross, died from HLH shortly before his second birthday in 2002. Ross was diagnosed before Marc, who received his own HLH diagnosis when he was 14 months old. (Robby, Marc’s four-year-old brother, has not been diagnosed with HLH and is temporarily residing with his grandparents in Florida while Marc battles for his life.)
Marc’s school, the Solomon Schechter Day School of Greater Monmouth County in Marlboro; Robby’s school, the Marlboro Jewish Center Nursery School; and Temple Rodeph Torah in Marlboro organized bone marrow drives on Feb. 10, 12, and 13.
They hope to find a “miracle match” for the fourth-grader, said Barry Weinstein.
Prior to the bone marrow drives, people throughout the county ordered home testing kits from the Gift of Life Bone Marrow Foundation, North America’s largest Jewish marrow donor and umbilical cord registry.
The registry also assisted the two schools and Rodeph Torah with funding, organizing, and promoting the drives.
“Being tested is simple and painless,” said Weinstein. “It just takes a swab of cotton inside the cheek. But we know it’s a lot to ask people to take this test, and that’s what has been so amazing — we never asked. The wonderful people who live and work all over Monmouth County volunteered to do this for Marc. Cindy and I will never be able to thank them adequately.”
Individuals and businesses throughout the county also have provided funds to help offset the cost of the bone marrow processing. Numerous organizations and community groups have helped to publicize Marc’s plight, including the Jewish Federation of Monmouth County, the Ruth Hyman JCC in Deal, and the JCC of Western Monmouth in Manalapan.
In addition, Gift of Life reported that people across the country have purchased testing kits on Marc’s behalf. Between the community drives and the use of the home testing kits, more than 1,000 members have been added to the National Bone Marrow Registry, Weinstein said.
“It amazes me how people can come together for a common cause and accomplish so much,” said Weinstein. “The ingenuity, generosity, and diligence of friends and family to spread the word have generated national interest.”
A larger registry increases the chance that a match will be found for Marc. However, his parents know that a match may not be discovered in time to save Marc’s life.
“Even if we don’t find a donor for Marc from these efforts, the drive will impact many other families in need for years to come,” Weinstein said. “This gives Marc the opportunity to touch many lives. He will be part of the miracle of giving.”
Since his diagnosis, Marc has undergone countless blood and diagnostic tests, injections, and medicinal therapies in an effort to monitor and contain his disease. But while some of the medications modulated his immune system, others triggered medical crises. On at least one occasion, Marc’s temperature rose to 107 degrees.
Last fall, Marc suffered a life-threatening seizure. Chemotherapy, immune suppression, and anti-seizure drugs helped bring the HLH under a semblance of control.
“This necessitated our plan to replace his existing immune system,” his father said. “Cindy is a research scientist and we have been processing information for a long time. The transplant is a brutal procedure — very, very rough — and we had hoped to avoid it. But that’s the path we have to pursue now. Marc deserves the chance to live a full and normal life.”
Even if a bone marrow match is found and the transplant is successful, it could be two years before his new immune system takes hold and Marc can rejoin society, Weinstein said.
“Throughout his ordeal, Marc has never complained,” said Weinstein. “He’s never said ‘why me?’ Because he’s such a bright light, the rest of us have to maintain a positive attitude right along with him. But it’s a day-to-day situation and it’s hard to live that way. Our faith in God and in the goodness of all the people who have reached out to Marc makes our journey more bearable.”
Gift of Life
Gift of Life Bone Marrow Foundation, North America’s Jewish donor registry, has been facilitating drives and providing donor and patient support for patients like Marc Weinstein since 1991. For more information, call 1-800-9-MARROW or visit their web site.
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