Boy with Rare Disease Inspires Donations of Blood and Kids' Band-Aids

PHOTO Liam Gorman blood transfusionPlayAnthony Gorman
WATCH Twins Struck by Rare Disease

These days, SpongeBob SquarePants, Transformers, pirates and Disney-character Band-Aids are all a part of the selection for Liam Gorman, who receives blood transfusions every third Friday of the month. But for Liam, who's six, there's nothing like a bacon Band-Aid strip to wrap up an all-day visit to Brooklyn Hospital Center.

Liam must get transfusions every two to three weeks because of a rare condition known as Diamond Blackfan Anemia, in which one's bone marrow is unable to produce red blood cells.

After a difficult birth, doctors found that baby Liam had a low platelet count. He spent his first 32 days of life in the neo-natal intensive care unit, but it wasn't until he was 15 months old that Liam was diagnosed with Diamond Blackfan Anemia. Only about 600 people in the entire world have been diagnosed with it.

Red blood cells carry oxygen throughout the body, so, when Liam's levels are low, he can become pale and fatigued.

But once he gets his transfusion, "it's like a match on gasoline," said his father, Anthony Gorman, a paramedic. "He's full throttle."

"Living with DBA can kind of feel like living on a rollercoaster," said Dawn Baumgardner, executive director of the Diamond Blackfan Anemia Foundation. "The day after a transfusion, patients can feel like they're at the top but two weeks later, they can feel very low and way at the bottom."

The Diamond Blackfan Anemia Foundation provides support for families and funding for much-needed research projects, said Baumgardner. Families and friends of DBA patients are encouraged to reach out to the foundation for support.

Even though some DBA patients can be limited in their activites, doctors have not discouraged Liam from playing sports or doing the things that most kids do, but he must be monitored carefully. Those with Diamond Blackfan Anemia can live full lives if treated and cared for properly.

And, his treatments are not for the faint of heart. Once a month, Liam takes off from school to get his transfusion. It's an early start to the day: Everyone is up by 6:00 a.m., and on the 7:00 a.m. Long Island Railroad train that brings them to Brooklyn Hospital. His transfusion takes several hours, and he and his family are usually not home until 6:00 p.m.

While the kids like to spice up their treatments with fun or funky Band-Aids, Liam and the other children in the pediatrics department didn't always have such colorful options. After the hospital went through a series of budget cuts, the kids were stuck with boring brown Band-Aids.

"The drama that ensued among all the kids who were given adult Band-Aids was unbelievable," said Anthony Gorman. "It really upset them. I can't even express the look on Liam's face after he was given an adult Band-Aid. It was like, 'this sucks.'"

So Liam had an idea. He said to his father last April, "Let's go ask people for Band-Aids." The colorful kind, that is.

Gorman began asking his paramedic friends to donate a box of Band-Aids for the kids at Brooklyn Hospital Center. The word spread, and in a matter of 3 weeks, Gorman had collected 500 boxes of children's Band-Aids.

"They were coming in like crazy, from California and Michigan and Florida," said Gorman. "People were networking and putting it on their Facebook pages. It just grew exponentially."

A Blood Transfusion, and a Colorful Kid's Band-Aid

It may sound trivial, but for those kids receiving blood transfusions or chemotherapy treatments, the choice of Band-Aid can go a long way, Gorman said.

"I see kids next to Liam getting chemotherapy or a 52-syllable medication, so to just put the kid in the room and have a mountain of Band-Aids in front of them and say, 'Pick one out.' It gives the kid some sense of control," said Gorman. "They can pick something out that fits their personalities and it puts a smile on their faces."

Gorman said that Brooklyn Hospital should be all set with colorful Band-Aids for a while. But Liam and his father plan to continue their campaign.

On February 9, Liam's elementary school, Countrywood Primary Center in Huntington Station, N.Y., will hold a blood, bone marrow and Band-Aid drive. This time, Gorman will send the donations to Cohen Children's Medical Center of New York.

"Once they're all set, we'll find another pediatrics department that needs them," said Gorman. "We'll do it one drive at a time."

Along with the Band-Aids, Gorman holds blood drives in honor of Liam every 6 to 9 months.

"It's not that the blood is going just to him, it's just to raise awareness that blood product is needed," said Gorman. "The drive says, here's a reason to take an hour out of your day every two months or so."

Leslie Gonzalez, a spokesperson for New York Blood Center, said that Liam is a perfect example on why to give blood: it literally saves lives.

"Blood donation is volunteer," said Gonzalez. "But the only resource in getting blood is if people volunteer to give blood."

That's when blood drives that honor specific individuals help to raise awareness of blood donation as a whole.

A Blood Transfusion, and a Colorful Kid's Band-Aid

"When there is someone that people know who needs the blood, there is always a strong motivation [for people to donate]," said Gonzalez. "We have many, many children just like Liam, and other people of all ages, who need blood. When you give blood, you're essentially saving a life."

Between blood transfusions, Gorman said that Liam is as normal as the next 6-year-old. He loves dinosaurs, and plans to be a paleontologist when he grows up.

"Once he hears the name of a new dinosaur for the first time, he spews it out like a college professor," Gorman said.

But Liam's disease is very serious, and he depends on others' blood in order to survive. Mary Dunkle, spokeswoman for the National Organization for Rare Diseases, said blood drives and fundraisers and charity events are more than just civic exercises.

"One of the most serious problems that people with a rare disease have is that there is too little or no research being done," said Dunkle. "If you get the word out there, you never know where it's going to lead, whether it will lead to a new treatment or a cure."

There are currently around 6,800 registered rare diseases, but only about 200 have FDA-approved treatments, Dunkle said.

"Liam's just an awesome kid," said Gorman. "He's tough as nails."