Marlboro boy recovering from 'miracle' operation
BY REBECCA MORTON Staff Writer

MARLBORO - Marc Weinstein has received the miracle that more than 4,000 people around the country had been hoping for him to receive. Marc, 10, is back home with his father, Barry, mother, Cindy, and brother, Robby, 5, after receiving a life-saving peripheral blood stem cell transplant in April.

Marc was born with the rare blood disorder hemophagocytic lymphohistiocytosis (HLH), which affects 1.2 in every one million children under the age of 15.

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 was 14 months old when he first displayed symptoms of the disease, his father said in a previous interview. Marc's younger brother, Ross, was also diagnosed with HLH and died in 2002 at the age of 2 of complications from a bone marrow transplant. Robby Weinstein does not have the genetic disorder.

It became evident in January that Marc would need to undergo a transplant. Through the collective efforts of friends, family, schools, temples and Gift of Life, bone marrow drives were set up throughout Monmouth and Middlesex counties in February.

Marc's story was related through emails and within a short time organizations from as far away as New Mexico were sponsoring drives to find the boy a bone marrow donor.

Inspired by Marc's story, more than 4,000 individuals were tested as possible donors and their names have been added to the National Bone Marrow Registry, to hopefully bring other people the miracle they need, Weinstein explained.

While the drives were being held, the Weinstein family received word that a potential match had been found for Marc.

"Even though we may not have directly found Marc a match through our collective efforts, I believe that every person tested served as a prayer," Weinstein said.

The information about the person who was a match for Marc is being kept confidential for the time being. Weinstein said he knows that the man lives overseas and is presumed to be younger than 30. He hopes that one day the family may learn the donor's identity to properly thank him for the gift he has given them.

On his 10th birthday Marc was ad- mitted to the Morgan Stanley Children's Hospital at Columbia-Presbyterian, New York City, to begin the pre-transplant regimen that would kill off his existing immune system.

April 1 brought the start to Marc's new life as he underwent a peripheral blood stem cell transplant. The Weinsteins were told it could take anywhere from two weeks to two months before the donated stem cells took affect and their son's new immune system would take hold. They were also told to expect a three- to four-month hospital stay as Marc's new immune system grew stronger.

Marc's miracle was not only in finding a donor, but also in the donated cells taking hold in a short time frame.

By the end of April, test results showed that the donor's cells made up 93 percent of Marc's immune system, Weinstein reported. That percentage was unbelievably high for the stage of engraftment, his father said. Doctors released Marc from the hospital on May 1, just a month after his procedure.

"It's a miracle really," Weinstein said of his son's recovery.

Even though he is now at home with his family, Marc still requires outpatient care visits several times a week to continue to monitor his blood levels. Marc's mother has taken over his home care and administers the same drug regimen he received in the hospital.

"She (Cindy) refused to leave his side in the hospital for more than five minutes. In my heart I believe it was her determination, intelligence and tenacity that allowed us to get to this point," Weinstein said of his wife.

Marc has passed day 60 post-transplant, which Weinstein said is a major marker. He has a long road ahead of him because his immune system is still young, Weinstein said. He said the family is taking it one milestone at a time.

Weinstein estimated that over the next two years Marc's immune system would mature. Until he receives clearance from his doctors, Marc must stay clear of any infections that could harm his fragile immune system. In about 18 months he can begin to receive immunizations to further protect him. As long as he stays healthy, Marc has a chance for a full and complete cure, his father explained.

"Life is fragile and we appreciate every moment," Weinstein said.

The Weinsteins believe Marc has a destiny to fulfill and are thankful for all the support they have received from the community over the years.

"We're blessed. It's very much appreciated and not forgotten," Weinstein said.