Lynn girl may need bone-marrow transplant

LYNN – The odds of being born with a twin brother are fairly high. The odds of being born with a twin brother and a brother and sister who are also twins are even higher.The odds of being born with all that and a genetic disorder shared by only 30 other new American babies a year are astronomical.Unfortunately, the odds are very low that 7-year-old Desirae Desmond will someday need a bone-marrow transfusion. So her father’s colleagues at the Peabody Fire Department are organizing a bone marrow drive Saturday.”We understand that the odds of somebody that participates in this drive being a 100-percent match for Desirae is a longshot,” firefighters union president Dave Ahearn said Monday. “But there’s the possibility that somebody may be a match for someone else somewhere in the country. So we may not have the outcome we’re looking for for Desirae but we may brighten somebody’s life and that’s what it’s all about.”As the youngest and smallest of four twins in the Desmond household, Desirae is the “baby,” her mother Dawn Javery acknowledged Monday. But Desirae also had some challenges that her parents just learned last month were attributed to a rare genetic disorder called Fanconi Anemia.Fanconi Anemia (FA) is an inherited genetic disorder that can lead to bone-marrow failure, making the patient susceptible to blood cancers and infections. It is almost exclusively a recessive genetic disorder, and children of two carriers of Fanconi Anemia have a 25-percent chance of having the disorder, according to the Fanconi Anemia Research Fund in Oregon.Desirae was born with an extra finger and has always bruised easily, her parents said – two traits that are associated with children having the disorder. But it wasn’t until late July when Desirae couldn’t shake a 104-degree fever that the Desmonds thought anything was out of the ordinary.They tried bed rest and fluids, antibiotics and a blood test, heading to Tufts Medical Center in Boston once a week from August to November. But Desirae didn’t get better; and nobody else in the family got sick – which Rob Desmond noted usually happens in a family of six with two sets of twins.So they tried a bone-marrow biopsy.”The doctor brought us into his office and said ?she doesn’t have cancer, it’s not leukemia,'” Rob Desmond recalled. “Then he said, ?but…'”Javery said the doctor reported a person normally has 150,000 to 200,000 platelets (which aid in blood clotting) in his or her bone marrow. Desirae had 6,800.The Desmonds promised the doctor not to Google Fanconi Anemia – in fact Rob said the doctor wouldn’t even let him write it down; he could only remember it sounded like former Red Sox Manager Terry Francona – but they went home and promptly sat down at the computer.”The first paragraph I read, I see there’s a 90-percent chance she’ll get cancer,” Javery said.When Rob Desmond shared the news with his colleagues at the fire department, they immediately began offering to help. They brought Thanksgiving dinner, did research and organized a bone marrow drive for Saturday.The event will be held at the Northshore Mall by the entrance to the Salem Five by Nordstroms from 11 a.m. to 4 p.m.Volunteers won’t be donating bone marrow, however.”The drive itself is a matter of filling out some paperwork and doing a mouth swab,” Ahearn said. “It’s five minutes and fairly painless.”Basically, the cheek swab provides enough DNA information to add the volunteer’s name to a national registry of potential bone-marrow donors. If somebody who needs a bone marrow transplant matches your DNA profile (a perfect match is a 10 out of 10) then the registry will contact the potential donor to see if they want to donate.Javery said that the disorder was like “a ticking time bomb” as she never knows when Desirae might become ill and need the transplant.But Desirae said Monday she feels “good” now and seemed confused as to why somebody might think otherwise. She and her siblings (twin brother Jake, and 10-year-old twins Robe