Boy with rare disease inspires blood donors





	Liam and his father, Anthony Gorman, of Huntington Station at the blood drive last month. Courtesy New York Blood Center (click for larger version)

December 10, 2009 | 10:35 AM
Last month close to 40 people donated 28 pints of blood, an amount that could save up to 84 lives, in honor of Liam Matthew Gorman, a 5-year-old from Huntington Station who has a rare form of bone marrow failure.

As he does every six months or so, Liam's father, Anthony Gorman, organized the Nov. 23 blood drive through his company, TransCare Brooklyn, a medical transportation services company.

"It's not like the blood is specifically going to him," said Gorman, a paramedic. "It's more to raise awareness about blood donations and blood drives."

Diagnosed at 15 months, Liam has Diamond Blackfan Anemia, a disease that renders his body incapable of producing any red blood cells. "Quite literally, in order for him to survive, he needs to have blood transfusions every two to three weeks," Gorman said. "The red blood cells carry oxygen in your body. If you do not have red blood cells, oxygen cannot feed the tissues of your body and you would suffocate on a cellular level."

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A statement on the New York Blood Center website at www.nybloodcenter.org said, "Each time he is transfused, we thank that anonymous donor who helps Liam."

When he was about a year old, Liam's parents noticed he looked pale but at first attributed it to the winter, when he would lose his tan.

But soon other symptoms followed: shortness of breath and loss of appetite and energy. The Gormans took Liam for extensive tests. Because Diamond Blackfan is so rare — only 600 people in the world have it — it took some time for the clinicians to make the diagnosis and treat the toddler with emergency blood transfusions.

"They realized his hemoglobin was at a catastrophic level," Gorman said. "He had compensated to the point that given a couple of more weeks, he would have died."

Today, Liam subsists on regular blood transfusions and is treated at the Brooklyn Hematology Center and at Schneider Children's Hospital in New Hyde Park.

A potential cure, albeit with a 17 percent success rate, is a bone marrow transplant from a brother or sister, Gorman said, but Liam is an only child and the Gormans are afraid to have another baby because his mother, Clara, has high-risk pregnancies.

He cannot test his son's hemoglobin at home because the family cannot afford the equipment and the insurance company won't cover it.

If Liam was a diabetic, insurance would pay for a glucometer to test his glucose level, Gorman said. "But the insurance company is being an insurance company. They are not pleasant to deal with."

With regular transfusions and medication, Liam's condition is stabilized, though at times he has had allergic reactions to the treatments and he must undergo chelation therapy to lower the high levels of iron that build up from chronic transfusions.

Despite his serious medical condition, Liam, a kindergartener at Countrywood Primary Center, has no deficits or disabilities, Gorman said. "If I didn't tell you my son was having this issue, you would just never know. He is a live wire. He is a light switch from the moment he wakes up to the moment he goes to sleep. He is the end-all, be-all: he is my world; he is the light of my life."

Yet treatment days are an emotional roller coaster for the brave 5-year-old, who must rise early and take the long trek on the Long Island Railroad.

"There are times when we've had to go home with the IV in his arm because they couldn't find a compatible donor for him," Gorman said.

Liam loves dinosaurs and plans to be a paleontologist when he grows up, his dad said. He can name 70 different dinosaurs, when they lived and what they ate.

Clued in to his interest, the hospital staff provides Liam with a steady supply of dinosaur prizes.

"Every time he comes in, he gets to pick his own dinosaur for being such a brave boy," Gorman said. "He's just awesome. There's no ifs, ands or buts about it."

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