Meet Matthew. He’s 11 years old, and while he doesn’t know what he wants to be when he grows up, he does have a few ideas — an Olympian, professional wrestler, mixed martial artist, a lawyer or maybe a business owner. His parents are both doctors, so he’s used to them working long hours. But that’s not the only reason Matthew has spent a lot of time with his grandmother.
Matthew’s brother, Michael, is 12 years old and loves to swim. He also has an ultra rare disease called kaposiform lymphangiomatosis, or KLA. He first began experiencing symptoms of the disease when he was 5 years old, but didn’t receive a diagnosis until a few years later. While Michael was going through his diagnostic journey and traveling long distances with his parents to see countless specialists, Matthew would often stay with their grandmother.
It was six years ago that a head injury put Michael in the hospital and ultimately led to him getting diagnosed with KLA. This experience means Matthew and Michael’s mother has some anxious feelings whenever they get into brotherly tussles. “She gets too nervous,” Matthew says. “She thinks Michael’s head is going to explode and we are going to have to go into the ER.”
Matthew remembers that day when his brother bumped his head. The family was on vacation and the two of them were playing when it happened. As the family rushed Michael to the emergency room, Matthew knew something was very wrong because Michael was screaming and crying. Matthew says he wasn’t scared because he “didn’t even know what a rare disease was. I thought he just hit his head or something and got banged up.”
KLA is an ultra rare condition in which lymphatic vessels develop atypically and can invade and cause damage to surrounding tissues, bones and organs. When Michael hit his head, the trauma from the injury caused him to become seriously ill and in need of blood transfusions. After eight days in the hospital, undergoing many tests, procedures and being poked and prodded, Michael received his diagnosis. Matthew says he was jealous of the food that Michael got to have in the hospital, like pizza and Jell-O. On the other hand, Matthew stayed with his dad, Greg, at the hospital hotel in the evenings and got to eat cafeteria food and candy bars from the vending machine.
Matthew also remembers his brother having to go to many different medical facilities over the next few years, and that sometimes he tagged along. Kimberley, Michael and Matthew’s mom, remembers the time at the National Institutes of Health when Michael played a joke on Matthew by putting his own name tag on Matthew’s back — hoping that Matthew would be the one who had to get blood tests done. Matthew doesn’t remember this, but upon hearing the story, he smiles and says, “Michael was a mastermind from the start.”
These days, Matthew sports a zebra headband that he is rarely seen without. He got this headband from a toy box at the hospital during one of Michael’s many appointments. At the time, Matthew didn’t know the zebra’s significance to the rare disease community. Now, he basically never takes it off. “This headband right here has been my companion.”
His piece of advice for other kids who have a sibling with a rare disease? Stay strong — and don’t give up.