BALTIMORE (WJZ) — As people from all over the world know, Johns Hopkins is often the last hope for those with rare disorders.
Mike Schuh reports how a little girl found help and now is giving back.
This story is about Ellie McGinn, a 5-year-old with a very rare disorder.
At the age of 3, Ellie was no longer able to walk or run around like she does now.
“Knock on wood. We hope it continues. We pray for strength every day,” said Ellie’s mom Beth McGinn. “She would take off running at the park with her friends and just collapse on the ground halfway where she was trying to get and she would scream, ‘My feet. They hurt. My feet hurt.'”
Ellie has a mitochondrial disease. Her rare disorder creates problems with the part of her cells that convert food into energy.
“Tissues that need a lot of energy, like the brain, often show the first signs that something is wrong,” said Richard Kelly, Johns Hopkins Medicine.
Her parents learned that Ellie might die at the tender age of 10, but then they found Kelly, a researcher at Kennedy Krieger.
Kelly realized she didn’t need any drugs but a custom blend of vitamins. Three times a day, the vitamins give her energy cells the boost they need.
“I do think different for Ellie now seeing how she’s responded to treatment,” Kelly said.
“The approach here is different. It’s all about hope. It’s all about how we can fix these kids,” said Beth McGinn.
Now Ellie is so much stronger.
Kelly let his students see, so later when they become doctors, they could better diagnose such disorders.
For reasons like this, the McGinns have created a website with information on the specific condition that Ellie had.
“I’m heartbroken if there’s another family out there that gets the same news and doesn’t know that there is an option to keep their child strong,” Beth McGinn said.
People are “emailing us to ask about what kind of treatment she’s on, so she’s going to help point people in the right direction,” said Mike McGinn, Ellie’s father.
The website also points them back to Johns Hopkins, where someone like Kelly has created a breakthrough with a very rare condition.
Worldwide, there may only be 100 kids like Ellie. And the more they can find and study, the better for them all. To visit Ellie’s website, click here.