INDIANAPOLIS (WISH) — At first glance, Henry Allen-Dollard looks no different than any other 5-year-old boy. His mom says most people have no idea the potential danger her son battles every day.
“It was really hard at first because every day I was wondering if he would wake up,” said Tiffani Allen.
At just 18 months old, Henry became the 158th person in the world to be diagnosed with Barth syndrome, a rare genetic disorder that can weaken muscles, affect the immune system and even cause heart failure. Most of the symptoms are masked on the outside. Experts say these boys can appear “deceptively healthy.”
“You would never know anything is wrong until he starts to wear out,” said Allen.
But she says catching something as common as the flu could mean the need for a new heart.
“If he gets a fever of 100 and it doesn’t go down, then we’re immediately to the ER or the clinic and then they give him a bag of fluids in case it’s bacterial,” said Allen.
They also make regular visits to Riley Hospital for Children at IU Health. And it was there Henry and his mom met a doctor who changed their life.
“The stress went away when we met Dr. Grzegorz,” said Allen.
Dr. Grzegorz Nalepa is a pediatric cancer specialist who diagnosed Henry four years ago.
“And since that time, he became a part of my life,” said Napela.
But it is clear kids like Henry are more than just patients. The doctor recently gave a board game to Henry. Henry returned the favor by giving the doctor an adult-sized super hero cape just like the one he has.
And this year, Grzegorz will begin a research project focusing on Barth syndrome.
“The hope is to find something that we can do for those patients which can cure them and prolong their survival so they can enjoy a normal life,” said Grzegorz.
He says for patients like Henry, he hopes he can help.
“They’re just amazing,” said Grzegorz. “They’re a constant inspiration – both in the hospital and the research lab and they are the reason we do what we do.”
“You still worry because it could happen any day,” said Henry’s mom. “But hopefully he lives til 99 and healthy.”
Henry also sees specialists at the Barth Syndrome Clinic at Johns Hopkins.