Child's plight inspires outpouring of help BY REBECCA MORTON Staff Writer What started out as a community effort to find a miracle for one Marlboro boy has spread across the nation. Marc Weinstein Born with the rare blood disorderHemophagocytic lymphohistiocytosis (HLH),Marc Weinstein, 9, is in need of a bone marrow or blood stem cell transplant. According to the Histiocytosis Association of America's Web site, HLH's prevalence is 1.2 in every one million children under the age of 15. When residents of Marlboro learned of Marc's current need, they came to his family's aid. Volunteers came forward towork at bone marrow drives, alumni from Marc's school, the Solomon Schechter Day School, arranged drives on their college campuses, and children in Marc's class sold refreshments to raise money for testing kits. "We have friends,we have family andwe have friends that we didn't know we had. And we're grateful for it, for them," Marc's father, BarryWeinstein, told GreaterMedia Newspapers. There are two types ofHLH: the familial kind, which the child has at birth; and the non-familial kind,which can be triggered by a virus such as Epstein-Barr. Most patients showsymptoms before the age of 1, but Marc was 14 months old when the genetic disorder first produced symptoms that mimic infections. Symptoms include a high fever, rash, jaundice, liver and spleen enlargement and possible neurological symptoms.An excess of white blood cells called histiocytes are produced with HLH. Normally infection fighters, the large numbers of white blood cells are not "killed off" when the body is finished fighting the infection due to a lack of or low NK (natural killer) cell function. The abundance of cells tend to lodge in healthy tissue, causing inflammation and organ damage. Marc's younger brother Ross was also bornwithHLHand died in 2002 at the age of 2 after complications with a bone marrow transplant.According toWeinstein, there are different genetic forms of the disease, but in both boys' cases the gene has not yet been identified. Treatments for the disorder include a combination of immunosuppressive drugs and chemotherapy, but this provides only temporary remission for those with the familial form, theHistiocytosisAssociation reports. Themost likely cure is a bonemarrow transplant and more recently, peripheral blood stem cell treatments have been performed. Because Marc is small, his doctors wish to performa peripheral blood stemcell transplant. Marc is unique, his father said, because there is no other documented case where a patient went so long, close to 10 years, without receiving a transplant. The family chose to hold off a transplant as long as possible in hope that more research on the disorder would be conducted. Weinstein credits his wife, Cindy, for her countless hours of research and preventative measures to keep Marc healthy. Despite the fear of germs entering their son's systemtheWeinsteins have done their best to ensure Marc has a semi-normal childhood.Weinstein saidMarc cannot go on an airplane because of the poor air quality. In the summer his parents do their best to make up for the winter months, whenMarc must in effect hibernate to try to avoid coming down with common viruses. Recent developments in Marc's health indicate that a transplant is now a necessity. After a potential match for Marc turned out to not be correct, theWeinsteinswere left with fewoptions- wait for another donor to be found in the national registry, or spearhead a drive of their own to enter more people into the registry and potentially find a match. Six years ago Marlboro residents came together to help theWeinstein children and once again the community responded. "I know people are good and sometimes we lose sight of how good we are and what we'll do for other people,"Weinstein said. To organize and make the recent drives reach more people, Weinstein enlisted the help of local schools. MichaelDanziger, ritual vice president at the Marlboro Jewish Center, was a part of the drive in 2002 and when he heard about the present need for one he got on board again. Administrators at the Solomon Schechter Day School also joined in to organize drives to help one of their students. Gift of Life,NorthAmerica's largest Jewish marrow donor and umbilical cord blood registry, provided a large subsidy to help pay for the cost of processing the samples of prospective donors. To help cover the remaining costs amass e-mail was sent out and within days an outpouring of financial support was found within Marlboro and as far away as New Mexico. Within Marlboro, bone marrow drives were held at the Marlboro Jewish Center, Solomon Schechter Day School, Temple Rodeph Torah and Shalom Torah Academy. Drives also sprang up in East Brunswick, Deal, Long Island. N.Y., and on college campuses across the country. On Feb. 15 it was reported that 1,500 people had been tested, with an estimate of 2,500 total by the time all of the drives were finished. "I believe Marc's life is touching a broad range of people right now in many different ways, whether it's through a bone marrow match or whether it's through the acts of kindness that are being paid forward by our whole community and it's reaching a national level,"Weinstein said. On Feb. 12, Solomon Schechter held a drive at the school in Marlboro and more than 100 people showed up. "We've had an unbelievable response from the community at large," said Linda Glickstein, director of admissions and marketing for the school. Testing was simple, requiring nothing more than a cotton swab sample from the four quadrants of the potential donor's mouth. Chaya Friedmann, the school's director, explained that the Marlboro Jewish Center spearheaded the drive as they had conducted one six years ago to help Marc and Ross. Friedmann said as soon as they were made aware of the need they were eager to help. Solomon Schechter students babysat for the volunteers and for those people being tested at the drive,whileMarc's fourth grade classmates sold refreshments and raised almost $300, Friedmann said. "What's amazing to me is that we expected our school families to respond in everyway, but the amount of total strangers who are pouring in to our school on a steady basis is justmind boggling tome,"Glickstein said, tearing up at the public's show of support. Jamie Bohm, director of the volunteers at Solomon Schechter, said everyone who came and offered their time was amazing, constantly asking what more they could do. The volunteers were given training on the different tasks they would oversee at the drive. "I have children and I think that you always want to help another child," Mindy Grafstein said about why she chose to volunteer. Asimilar feeling seemed to come fromvolunteers and those who donated a sample, which was a karma aspect of "if it were me I would hope others would help." Tissue type is inherited, which means Marc'smatch would likely be of Eastern European descent, but people of all backgrounds were welcomed to the drive as they could be matches for other individuals. "Blood knows no religion, you may get a match for somebody else having nothing to do with any of these affiliations. You know, we're all the same,"Weinstein said. "That kind of statement reflects this family. They are so moved that other people may be helped,"Friedmannsaid about theWeinsteins. For those who could not make one of the drives but still want to join the registry of donors, a testing kit may be purchased from theGift of Life InternetWeb site for $36. The Web site is www.giftoflife.org. Marc's father is confident amatch will be found for his son. "By a month from now I would be surprised ifwe didn't have amatch forMarc one way or the other. Whether it's through the natural processes of the registry or through our drives," Weinstein said, adding that he must stay positive because negativity brings negative outcomes. Weinstein estimated that results from those who were tested would be known in two to three weeks following the arrival of the samples at the lab. At the time a match appears for Marc the donor would have to undergo more tests to fully identify if their stem cells would match. In the case ofMarc requiring a stem cell transplant, the donor would be given an injection of filgrastim,whichwill stimulate the growth of stem cells prior to the transplant. The blood stem cells would be collected through a process called apheresis,which requires a needle to be placed in each arm. Blood is removed from one arm, processed through a cell-separating machine that collects the stem cells, and is then returned to the donor through the other arm. Weinstein said the name of the procedure makes it sounds scarier than it is. ForMarc the transplant will be a fragile time as his newly grafted immune systemwould be like an infant's. It could take up to two years following the transplant until Marc would be able to live a normal life. "We don't care, it's a small price to pay and he's still young," his father said. Once Marc gets his clearance after the transplant his dreamis to take a vacation on a Disney cruise. In themeantimeMarc continueswith his studies, learning about presidents and triple digit multiplication from home and playing on the computer. Through it all Marc does not complain, Weinstein said, adding that he admires his son so much and knows that the child has a purpose to fulfill. He said his family is grateful for all the support and help they have received from many people. "Our hearts are full of love and support from them," he said