Stories about: blood disorders

Battling aplastic anemia: Clinical trial gives hope to Eli and his family

Eli, who has aplastic anemia, smiles while getting a transfusion
PHOTOS: SAM OGDEN

When Eli came home from baseball practice this past April with bruises on his body, his mom Jessica, an internal medicine specialist, and his dad Bryan, a trauma surgeon, didn’t think anything of it. “We assumed his coach was just throwing hard pitches, because every time Eli got hit with the ball, his skin bruised,” says Jessica. But 10-year-old Eli didn’t let a few bruises stop him. He continued to play baseball and basketball, work hard in his fifth grade classroom and goof off with his two younger sisters, 6-year-old Anna and 3-year-old Sarah.

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Surviving the unknown: How Type 3 von Willebrand disease made Vasudha’s family stronger than ever

A picture of Vasudha, a kindergartner with Type 3 von Willebrand disease
A recent photo of Vasudha, who is currently in kindergarten.

As soon as Madhu and Sugastha’s daughter, Vasudha, was born, a nurse performed a routine blood prick to check the baby’s glucose levels. Since Sugastha had developed gestational diabetes during her pregnancy, the test was making sure that her newborn daughter’s blood sugar was within a healthy range.

“But then, that little spot on her toe didn’t stop bleeding for more than a day,” Madhu recalls. “The nurses chalked it up to the fact that she was a little baby, kicking her feet around, and that’s why the bleeding wouldn’t let up.”

It was just the beginning of mysterious bleeding events though. Over the first year of Vasudha’s life, her parents noticed strange instances of prolonged bleeding that resulted from small scrapes. When she was 8 months old, they grew concerned when bruises began appearing all over Vasudha’s body for seemingly no reason. Their elder son, Saketh, had never experienced any of this when he was a baby.

“We went to our pediatrician and he told us about the possibility of von Willebrand disease,” Madhu says. “Up until this point, I had heard about hemophilia but didn’t have any other knowledge about bleeding disorders.”

Von Willebrand disease is the most common inherited bleeding disorder — as many as 1 in 1000 babies are born with it — and it affects the body’s blood clotting process. There are several types of the disease; they are known as Types 1 through 3, with Type 3 being the rarest and most severe form of the condition.

“Our pediatrician ordered a blood panel test for Vasudha,” Madhu says. “He called us with the results and said that it was the worst-case scenario, Type 3 von Willebrand disease.”

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Overcoming Drew’s blood disorder, together

When Jen’s son Drew was diagnosed with aplastic anemia, a blood disorder, their entire lives changed. In this blog, Jen describes how she and Drew coped with the disease, treatment and recovery, as well as the care they both received at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. (Click the link to see the center’s new website.)

By Jen D’Auteuil

Jen and her son Drew

When my son Drew was diagnosed with aplastic anemia (AA) at 10 years old, our lives turned upside down. His bone marrow had stopped producing the cells that he needed for iron and oxygen transfers, for blood clotting and fighting off infection, making him very sick very quickly.

All of a sudden my active and social little guy was sidelined—he tired easily and was at constant risk of bleeding or getting sick, so he needed to be kept away from almost everyone he knew. He was started on a chemotherapy regimen called anti-thymocyte globulin (ATG), which doctors hoped would reactivate his bone marrow. In the meantime, Drew and our family went into isolation because he couldn’t be in public places, and we had to ban visitors from our home. Our only real contact with the outside world was by texting. (Something I had never bothered with; but a little time in isolation can change your mind!)

For the next few months we had to sit in this medical exile to see if the AGT did its job. It was a difficult time, but we were very fortunate to have a supportive and generous group of friends, family, church and community members to lean on.

As time went on, I found myself Googling “AA and children” hoping to find another family that could relate to our struggle. Through my search, I met another mom whose child had AA and through her, I met another and then another after that.

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