11-year-old has a hole in her heart, a health condition that impacts 1 in 100 million
SEQUIM, Wash. (KING) – An 11-year-old girl in Washington state is battling an extremely rare health condition that has left her with a hole in her heart.
In total, Ember Hanshaw has four health issues involving her heart and lungs.
Doctors said being born with a hole in your heart is an abnormality that usually heals over time. However, Ember’s didn’t.
“I just try not to think about it too much,” she said.
Jennifer Hanshaw, Ember’s mother, said her daughter’s condition is tough to deal with.
Ember recently spent 12 days in the ICU, where she underwent 76 tests. She eventually had a catheter inserted into her heart.
“It gets scary sometimes,” Ember said.
A few weeks ago, doctors also discovered Ember has three other serious heart and lung conditions, severely restricting what she can do. Things as simple as playing with other kids at school are out of reach for her.
“I’m kind of overlooked because I can’t run or play the same games,” she said.
Doctors told Ember’s mother the combination of health conditions affects only one in every one million people in the world.
“Why her? That’s my selfish thought. Why her?” Hanshaw said.
Hanshaw said matters are only made worse by the number of conditions her daughter suffers from.
“It would be one thing if it were one thing, so we could focus on that one thing and just fix it, but it is not just one thing,” she said. “It’s all these things.”
The family has to travel from their home in Sequim to Seattle for treatment one to two times a month, costing them between $300 and $500 per trip.
This regimen may last the rest of Ember’s childhood and maybe longer.
“I just want her to have all of the best possible opportunities that all the normal kids get to have, you know?” Hanshaw said.
As for Ember’s prognosis, doctors said it is on a day to day basis and they don’t know for sure.
However, Ember has a spark that her family vows will not be extinguished.
“For her, I hope it’s to light her future,” Hanshaw said.
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