Florida Girl With Sickle Cell Disease Suffers Third Stroke at Age 7

PHOTO: Alejandra and Alejandro Melgar both have severe sickle cell disease
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Alejandra Melgar is just 7 years old, but because of serious health problems, she can't lead a normal life full of fun, friends and school work.

Alejandra's immunity is severely compromised because she had a bone-marrow transplant in July. The little girl from Homestead, Fla., suffers from severe sickle cell disease, a genetic condition that causes the blood cells to assume a sickle shape. Because of the shape, the cells can block blood flow and ultimately cause organ damage and strokes.

Throughout her short lifetime, Alejandra has suffered through three strokes. The third one, in October, left her with weakness on her right side and an inability to speak.

"When she was four-and-a-half years old and I was pregnant with my son, she had the second stroke," said Lilian Melgar, Alejandra's mother. "We didn't even know she had the first one, because there were no symptoms or consequences. And the third one was much worse than the second."

Her battle with sickle cell disease led to weekly blood transfusions. But after her most recent stroke, doctors told her mother she needed a bone-marrow transplant. Bone-marrow transplants are generally used to treat only the most severe cases of sickle cell anemia.

Alejandra would have to wait months to find a suitable donor. Her 3-year-old brother, Alejandro, couldn't be a donor because he also has sickle cell disease.

"I was praying to find a donor, but we had to wait to find someone outside the family," Melgar said.

Her prayers were finally answered this summer, and Alejandra underwent a transplant in July at Holtz Children's Hospital Miami.

"Alejandra is recovering well. She's doing very well," Melgar said.

Struggle for Normalcy

But she's still a long way from living a life similar to other children her age. The bone-marrow transplant left her immunity compromised, so she has to wait almost a full year before returning to school, and can't play with friends.

"After the transplant, we gave her medications to suppress her immune system, so it's really not active. Anything she is exposed to, she can actually contract," said Silvia Willumsen, a nurse and pediatric blood and marrow transplant coordinator at the University of Miami. "The only time she comes out is to come to the hospital to see us."

Alejandra receives physical therapy, occupational therapy and speech therapy at home. Right now, the only word she can say is "Mama."

Because her little brother has to receive regular blood transfusions as well but Alejandra can't go out, Melgar sometimes struggles.

"Everybody says it's hard, but I have to deal with it. I'm fine, and I'm blessed that Alejandra is recovering well," she said.

New Transplant Protocol Introduced

Bone-marrow transplants typically involve destroying all the body's bone marrow and replacing it with donor marrow. This is still one of the mainstays for treating leukemia.

There are often complications with this kind of procedure, because the risk of infection is high and there can be powerful side effects of the chemotherapy or radiation used to destroy the bone marrow.

But about four or five years ago, new protocols were developed that don't require the eradication of all a patient's bone marrow.

"The new protocols tried to take advantage of the fact that for sickle cell disease, you don't have to replace all the cells with donor cells," said Dr. Martin Andreansky, director, pediatric blood and marrow transplant program at the University of Miami Sylvester Cancer Center.

As a result, there is less chemotherapy and fewer toxic side effects.

"Most patients end up being a mixture of their own cells and donor cells," Andreansky added. Those cells are the ones that give rise to red blood cells, white blood cells and platelets.

Trials with this modified procedure have yet to be evaluated, but so far, they seem to work.

But so far, Alejandra is doing well.

"I think the amount of her own cells in the blood will increase, but she will still be OK from the clinical perspective," Andreansky said. "But it's too early to say if the transplant has worked in the long run. We will have to wait a couple of years."

With luck, Alejandra will no longer have sickle cell disease. She will still carry the trait for it, but these people, said Andreansky, can lead normal lives.

Melgar also has another tough battle to fight. While Alejandro hasn't suffered a stroke, he is starting to have complications related to his sickle cell disease and also needs a transplant.

The Melgars, who are Latino, are having trouble finding a matched donor because there are so few donors of color.

"The problem with minorities is they are severely underrepresented in bone-marrow registries," Andreansky said.

Melgar said she's grateful her daughter found a donor, and she desperately hopes she can find one for her son.

"I want to let people know about this. People, especially kids, need bone marrow," she said. "They can save a lot of lives."

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