Dear Henry

Parents hope registry leads to match
Marrow needed to fight rare anemia

By Jean Laquidara Hill

RUTLAND— James and Leone E. Morgan did not take the birth of their daughter for granted on Feb. 23 nearly nine years ago.

Two years earlier the Morgans had buried their prematurely born son.

Alecia grew into a loving and shy child and a passionate fan of the Patriots, especially Tom Brady. “She was fine, you know, a typical kid, the ear infections, a couple of colds,” Mrs. Morgan said recently.



“She’s a beautiful 8-year-old girl whom we thought was very healthy until right around her 8th birthday,” she said.

But last February, as her parents were planning her birthday party, Alecia got a bad cold. She was diagnosed with a sinus infection, and antibiotics were prescribed.

But when the antibiotics failed to work, Mrs. Morgan took her daughter back to the doctor, who sent her to UMass Memorial Medical Center — University Campus in Worcester.

“We were waiting in a little cubicle and three doctors walked in, and I thought, ‘This is bad,’ ” Mrs. Morgan said.Alecia was admitted to the hospital for tests. She seemed to improve and the Morgans brought her daughter home.

On March 17 at 1:45 p.m. when the telephone rang with test results, Alecia seemed so much like her old self that Mrs. Morgan told the doctor: “Alecia is fine.”

“No she’s not,” Mrs. Morgan recalls the doctor telling her. She felt like she had been kicked in the stomach.

“Kids aren’t supposed to be so sick,” she said.

The doctor told Mrs. Morgan that Alecia had Fanconi anemia. Meetings were set up to explain the condition further and arrange treatments.

Meanwhile, Mrs. Morgan read about her daughter’s illness on the Internet. As she read, a weight pressed down on her chest.

As Alecia’s pediatric hematologist, Dr. Christopher P. Keuker of UMass Memorial Medical Center explained in a recent interview that Fanconi anemia is an extremely rare, life-threatening disorder that disables the body’s ability to produce blood.

“It is the first and only case I’ve treated in my career and it’s over 10 years,” Dr. Keuker said about Alecia’s diagnosis. His colleague, who has been practicing for 20 years, has only treated one case of Fanconi anemia.

The disorder is inherited from two recessive genes, one from each parent. In addition to its other cruelties, Fanconi anemia increases the likelihood of blood cancers.

“Most blood and cancer disorders in kids are rare, and this is the rarest of rare,” Dr. Keuker said.

Put simply, said Dr. Keuker, Fanconi anemia causes bone marrow to fail so it cannot produce blood. Alecia gets blood transfusions every six weeks to stay alive. After the transfusion, said Mrs. Morgan, Alecia’s lips and cheeks are rosy and she has energy. But as the weeks pass, her color fades to pale. Her red and white blood cell counts drop, as does her blood’s ability to carry oxygen to her organs. Alecia gets lethargic, weak and susceptible to illnesses.

The possible solution, said Dr. Keuker, is a risky bone marrow transplant that is performed in only three hospitals in the country, including Memorial Sloan-Kettering Cancer Center in New York City, where Alecia goes for treatment in addition to treatment from Dr. Keuker. He said Memorial Sloan-Kettering has agreed to consider Alecia for a transplant, if a donor can be found.

The Caitlin Raymond Bone Marrow Registry will register donors from 10 a.m. to 5 p.m. Nov. 24 at Bushnell Farms Store, 26 Pomogussett Road (Route 56).