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.
In This Section
Your Impact on the Riley Relief Fund June 2, 2020
We put out the call that Riley Hospital for Children needed help during the COVID pandemic and you answered. Find out how your donations impacted Riley kids, their families, and hospital staff.×
Nurses Week 2020 May 7, 2020
A heartfelt thank you to the nurses at Riley Hosptial for Children as we celebrate Nurses Week!×
Waiting for Two Miracles April 27, 2020
Riley mom Amie Hastings lost her job due to the coronavirus pandemic. Your donations to the Riley Relief Fund provides emergency assistance to Riley families during the coronavirus crisis. It also supports Riley program and team member needs, and gives doctors, nurses and other healthcare professionals flexibility as they respond to the evolving healthcare crisis.×
Happy Birthday, Teddy! April 16, 2020
Riley kid Giancarlo "Teddy" Gomez celebrates his eighth birthday at Riley Hospital for Children. Please join us in wishing him a Happy Birthday!×
A Piece of Riley June 27, 2019
I am the Riley Wagon. I mean a lot of things to different people. I'm also a way for donors, like the Burr family, to give back to Riley Hospital for Children.×
Be the Star You Are May 22, 2019
Check out this behind the scenes look at the 2019 Riley Cancer Center Prom.×
Meet Rowan Breyts March 19, 2019
A baby dies in Indiana about every 14 hours. Rowan Breyts was not one of them. However, he came dangerously close.×
Christian's Research Story December 19, 2018
Learn how Riley research helped save Christian Daugherty's life.×
Kennedy's Story: How Family Support Helps December 19, 2018
Watch the Strayer Family's story about their Riley journey.×
Be the Hope NOW: The Campaign for Kids December 19, 2018
We have launched a $175 million campaign for Riley Hospital to save kids’ lives through three high-priority programs.×