Garret’s story: Competitive Dancer with Hemophilia

Garret Schuster was just six months old when he was diagnosed with hemophilia. He went to see a pediatrician to treat an ear infection but the doctor sent him for tests after noticing bruises on his body. When he went home, his parents noticed additional bruising from his elbow to his shoulder just from the blood test they had conducted at the doctor’s office.

The diagnosis came soon after that appointment and Garret began treatment. He had IV infusions regularly, administered through a port in his chest. He was also on medication. Unfortunately, the treatment wasn’t working like it was supposed to. While the therapies don’t cure hemophilia, they do make it a manageable condition. However, Garret was still experiencing frequent bleeding, bruises, and nose bleeds.

More Diagnoses

After more tests and many appointments, Garret was given not one, not two, but three additional diagnoses. He was told he had GATA1, a rare condition which causes the bone marrow cells to not produce an adequate amount of platelets. Additionally, he was diagnosed with two platelet disorders.

Garret has undergone surgeries to help control his bleeding. By cauterizing the blood vessels, the bleeding can be minimized. Unfortunately, he still deals with nosebleeds, some of which can last for up to 12 hours. His condition means he can’t participate in any contact sports. But, Garret hasn’t let his diagnosis stop him from being active.

Dance as an Outlet

Garret has become a very dedicated competitive dancer. Over the past three years he has taken classes in ballet, tap, and jazz.

“He takes all the frustration and the pain from his bleeding disorders and he channels those emotions into his dance.”

His care team makes a special effort to ensure he can make his dance commitments, scheduling treatments around his class schedule. Their goal, they say, is to make Garret’s life as normal as possible. They’ve also taught him how to be an advocate for himself.

Now 10 years old, Garret is managing his diagnoses quite well. He’s found an outlet to express himself and he’s also been a part of quite a few clinical trials, helping researchers find better treatment options for all three of his conditions.

You can read more of Garret’s story and his experience living with hemophilia here.

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