Stories about: Aplastic anemia

A look back: Our most popular stories of 2018

Top stories of 2018
PHOTO DESIGN: SEBASTIAN STANKIEWICZ/BOSTON CHILDREN’S HOSPITAL

As 2018 comes to a close, we’re taking a look back at some of our most popular stories from the past year, from ground-breaking surgery and clinical trials to stories of unbelievable courage and hope.

Thank you to the many families and patients who kindly shared their stories with us in 2018. As always, you continue to inspire us.


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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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Aplastic anemia or dyskeratosis congenita? Unclear diagnosis forces a difficult decision

stem cell transplant trialHaving a child diagnosed with a life-threatening illness is heart-wrenching for all parents, but when the diagnosis itself is uncertain, parents can face excruciatingly difficult decisions. This is what Katie and Josh Stevens of Idaho confronted after their son Riley was diagnosed in October 2012 with the blood disorder aplastic anemia, in which the body’s bone marrow produces too few oxygen-carrying red blood cells, too few infection-fighting white blood cells and too few clot-promoting platelets.

He was an 11-year-old skier and runner who was tired, bruised and unable to shake a cold. When his blood was drawn, he became pale, and his lips turned blue.

So Riley began a course of medications to suppress his immune system, but he had only a minimal response to the therapy. He needed a stem cell transplant.

Further testing at Seattle Children’s revealed Riley had shortened telomeres, or ends of chromosones, which stymied cells’ ability to regenerate. This is characteristic of another rare bone marrow failure syndrome called dyskeratosis congenita (DC), but Riley did not manifest other telltale signs of DC such as white spots in the mouth, lacy rash around the neck and brittle nails. Katie and Josh would need to decide between two very different stem cell transplant options.

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Five years after stem cell transplant complications, he’s an active teenager

Drew at 2014 Be the Match Walk in NYC. His stem cell donor lives in Germany.

“It’s eye-opening to realize how fragile life really is when you’re young.”

Drew D’Auteuil certainly knows whereof he speaks. He is a 16-year-old animal-loving, skiing, rowing, volleyball-playing, honor roll student and licensed driver with braces and a shock of red hair. In April 2010, five months after receiving a stem cell transplant to treat the blood disorder severe aplastic anemia, Drew suffered rare, life-threatening complications.

One day Drew was biking with a friend near his New Hampshire home, suffering little more than a mild cough. The next day he was in the intensive care unit at Boston Children’s Hospital, intubated because of respiratory failure. Soon other organs were failing, too. Quick action by ICU and transplant clinicians saved the boy’s life.

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