ABINGDON, Md. — Pigtails and all—June Brown can be a burst of energy, and just a matter of days short of her third birthday, her mother says she is so much more.
“She’s funny. She’s so intelligent. She remembers things that I don’t even remember sometimes and loves to sing. She loves her friends at daycare,” said Laurie Brown, “She plays like a normal child. She looks like a normal child. You would never guess that she’s hiding this genetic disorder.”
It was the Abingdon toddler’s daycare, which first noticed something was wrong about a year ago when she would fall asleep sitting up or in the middle of the playground.
Then came bouts of sickness that defied normal childhood ailments.
Family’s bid to find liver donor for 3-year-old daughter
Family’s bid to find liver donor for 3-year-old daughter
Ultimately, doctors at Johns Hopkins determined she had OTC deficiency—a rare genetic disorder.
People with the disorder suffer from a liver not being able to remove toxic ammonia from their bodies.
June faces the prospect of suffering neurological damage or even death if she doesn’t receive a liver transplant.
“Putting ourselves out there on Facebook as a pretty private family was a big choice that my husband and I made together, you know, even putting her picture out there,” her mother told us, “but at this point, we are weighing what’s most important and what is most important is finding her the perfect match.”
June’s parents would be willing donors, but finding the right match due to June’s age and small blood vessels will be difficult.
Other potential donors could better her chance of survival, but they must have “A” or “O” blood type, either positive or negative, and can elect through Hopkins to donate specifically to June if they so desire.
It’s a desperate plea from a family, which is trying to set aside fear surrounding her diagnosis to find a solution.
“There isn’t a lot of room for you to sit there and question why this happened to you,” said Brown, “Maybe in the quiet moments late at night, you’re sitting at your desk trying to get some work done and, ‘Geez, like why did this happen to us? Why did this mutate for her. I didn’t carry it. Why did this happen?’ but for her sake, you have to just keep your eye on the prize.”
Learn more about live donor liver transplants here.
