‘Every day is a battle’: Parents of infant with rare genetic disorder seeking miracle

A baby is fighting for her life after being diagnosed with a disease so rare that only 13 others worldwide are known to have it.

Evelyn, the 3-month-old infant, has been diagnosed with Wolman’s disease. And she isn’t expected to live a very long life, but her family relentlessly refuses to quit.

The family, hoping and praying, leaning on their faith in God and the guidance of Evelyn’s doctor for help. At the same time, they savor every day, hour, and moment with their little girl.

Evelyn’s parents, Dylan and Megan Haggerty, will always look at Evelyn as the blessing in their life that she’s always been.

“We weren’t trying to have kids at the time,” Megan said. “And then we were very surprised that we had little Evelyn.”

But their newfound joy turned to worry when Evelyn didn’t gain weight as she should.

“Around Fourth of July, she started having fevers,” Megan said. “And so we ended up going to the ER because it was so high. And they started doing a ton of tests.”

Genetic tests revealed a Wolman’s disease diagnosis, which prevents her body from producing a crucial enzyme that breaks down fat and cholesterol.

“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. “And I’ve never cried so hard in my life as a grown man, I’ve never had to experience that much just heartbreak.”

Despite the heartbreak, the Haggertys went to work and found a doctor in St. Petersberg who has never treated Wolman’s but had worked with similar diseases.

“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.

Evelyn lives in a hospital for the time being so she can receive enzyme replacement therapy.

“Every day is a battle, but you have to just choose to be happy in the moments that you can be happy and cry when you want to cry,” Megan said.

“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.

The Haggertys have a long road ahead, and Evelyn’s medical bills could cost anywhere from $500,000 to $1,000,000 for the rest of her life. But the family said they are blessed to have a strong community rallying around them every step of the way.

Click here if you’d like to follow and help Evelyn on her journey.