“Grayson is definitely the apple of our eye,” said Lisa, “We never miss the opportunity to be with him.” Grayson is the youngest of Lisa’s four grandchildren. He enjoys being outside, riding on a tractor, fishing, and playing with his big sister, Avery.

Grayson was born premature, weighing only three pounds, and spent the first 40 days of his life in the hospital. He wasn’t formally diagnosed with Barth syndrome until he was around two years old when Grayson’s pediatrician grew concerned about him not gaining weight. After multiple blood tests, they received the diagnosis that he had cyclic neutropenia* as well as Barth syndrome.

Grayson’s genetics doctor informed his parents about the Barth Syndrome Foundation. They have been to Baltimore’s Kennedy Krieger Institute twice, but the real insight into navigating life with Barth syndrome was being connected to the Barth Syndrome Foundation community. The family is provided with resources and support from those who have lived with Barth or are a caretaker of someone living with Barth. Those in the Barth Syndrome Foundation community have seen the good and the bad firsthand and can offer guidance based on their collective experience.

“I think it makes Grayson’s parents feel a little better when they know other people have been going through what they have, and they’ve learned a lot.”

“Grayson gets one good week a month,” said Lisa, “His numbers start to go down [due to the neutropenia] and the process from start to finish is usually about three weeks. They go down, then he bottoms out, then he starts to come back up and then he has a good week.”

When his numbers are down, he’ll often have a hard time getting the energy to eat. He’ll eat a little bit and then ask to be fed. When he gets too tired, his risk for getting sick increases.

Grayson maintains high spirits despite being exhausted. His mom, Jamie, came up with a jingle while waiting for his fever to go down: “while we wait, we hydrate” to which Grayson happily joins in on.

His family does their best to take advantage of his good weeks and ensure that he feels part of everything despite his Barth syndrome diagnosis. His sister, Avery, is careful to make sure that, when he needs a break, she includes him in activities that don’t require a lot of energy. Grayson often joins the family out by the lake with his floppy hat, canopy, and personal fan. He loves tractors and even has his own little tractor he can ride in and chase his other siblings around in.

Lisa continues to be a cheerleader for Grayson’s health and well-being. She hopes that sharing her story will raise awareness for others living with or caring for someone with Barth syndrome.

*Neutropenia occurs when you have too few neutrophils, a type of white blood cells. Neutrophils are important when fighting certain infections.