Henry Allen-Dollard loves riding his tricycle, painting and playing hide-and-seek. But give the 3-year-old a choice, and Henry says, “I want to go play with Dr. Grzegorz.” Henry’s mother Tiffini Allen can’t quite explain the bond between the little boy and hematologist Grzegorz Nalepa, M.D., Ph.D. She noticed that the first time the physician entered Henry’s room at Riley 

Hospital for Children at Indiana University Health her so n’s respiratory rate didn’t jump the way it did with other medical staff. At first she credited Dr. Nalepa’s soft voice, or his habit of wearing street clothes rather than a white coat. “But now I think Henry sensed ‘Dr. Grzegorz’ is a genuinely kind person who really cares about him.”

The admiration is mutual. Dr. Nalepa just plain likes Henry. “We have become good buddies throughout the years, and we always make sure to spend some quality time together when Henry comes to the hematology clinic,” Dr. Nalepa says. “We enjoy playing with toy cars and board games.”

Henry was born in Indianapolis on June 30, 2008. Within months, he was in and out of the hospital for seemingly unconnected medical issues including heart problems, growth delay and muscle weakness. Tiffini searched the internet for clues to her son’s symptoms and kept turning up an underdiagnosed genetic disorder called Barth syndrome. But with only 148 children in the world known as “Barth boys,” the disorder is so rare many doctors who examined Henry hadn’t heard of it- except for Dr. Nalepa.

Henry was admitted to Riley Hospital in February 2010 with fever and dehydration. Dr. Nalepa discovered Henry had neutropenia, a dangerous reduction in white blood cells that increases the risk of life-threatening infection. Knowing Henry also had muscle and heart problems, Dr. Nalepa agreed with Tiffini that her son may very well have Barth syndrome. Genetic testing confirmed the diagnosis.

Barth syndrome causes neutropenia as well as: a heart condition called dilated cardiomyopathy; low muscle tone; growth delay; and excessive fatigue. Tiffini used to be filled with fear that Henry would die from his cardiomyopathy. Confirmation of the syndrome was “a huge relief,” she says, because it enables his physicians to effectively treat him. “With the team of doctors we have at Riley, we feel like we have the best of the best from around the country,” she adds.

Since Henry started receiving treatment, his blood counts have remained in normal range and he no longer has recurrent infections that require hospital stays. “He is able to do essentially all the things that kids his age should be doing,” Dr. Nalepa says.

Henry’s parents are now vocal advocates for Barth syndrome research and Riley Hospital, hopeful that medical breakthroughs will help Henry even more. In the meantime, they decided to create a lasting memento for Henry’s favorite doctor - a hardcover picture book documenting their special friendship. “It was simply amazing,” says Dr. Nalepa. “It is one of the most treasured gifts I have ever received from my patients.

 

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