FORT MYERS, Fla. — A baby living in Fort Myers is battling a disease only 13 others have worldwide.
Evelyn, a 3-month-old infant, was diagnosed with Wolman's disease which is a rare genetic disorder characterized by a complete absence of an enzyme required to break down certain fats and cholesterol.
According to WINK News, the baby isn't expected to live a long life, but her family refuses to quit fighting.
Dylan and Megan Haggerty, Evelyn's parents, say they weren't even trying for a child at the time but were surprised with their daughter. But right away they started to worry when Evelyn didn't gain weight as she should.
“Around Fourth of July, she started having fevers,” Megan said to WINK News. “And so we ended up going to the ER because it was so high. And they started doing a ton of tests.”
Tests revealed a Wolman's disease diagnosis.
“I just had to kind of point blank ask…what’s it looking like, for my daughter…And he just kind of said, you know, ‘I don’t see her living past a year.’ And that’s the moment where we, I mean, we just broke down,” Dylan said to the media outlet. “And I’ve never cried so hard in my life as a grown man, I’ve never had to experience that much just heartbreak.”
But Evelyn's parents didn't sit in their sadness — they found a doctor in St. Petersburg who worked with similar diseases before.
“Doctor asked us, you know, ‘what’s your goal with this?’ And we said, we believe that she’s going to get a miracle through this a healing through this treatment that you guys are preparing. And this is going to prolong the years of her life. And he said, ‘I’m in 100% agreement with you and that we’re going to make this happen,'” Dylan said to WINK News.
As of now, Evelyn is staying at the hospital to receive enzyme replacement therapy. And her mom says every day is a battle but "you have to just choose to be happy in the moments that you can be happy..."
“That’s what we’ve been doing since is just, you know, trusting in the Lord for, for a miracle. I mean, because that’s, that’s what we’re in need of,” Dylan said to the media outlet.
A fundraiser page on Caring Bridge has been set up for Evelyn where people can donate to help with medical bills and leave encouraging messages for the family.
On the page, updates on Evelyn's journey are posted. Anyone interested in following along with the journey or donating can click here.