ST. LOUIS (KMOX) – A St. Louis family makes the difficult decision to go out of the country for medical treatment for their young daughter.
Four-year-old Evie Morgan drops her hot pink walking sticks and proudly shows how she can make it down the hallway without help.
“Ask any physical therapist, ask any neurosurgeon, and they’ll say she should be in a wheelchair,” says mom Heather. Dad, Joe, adds, “It’s too much of a miracle that we’ve already seen to just write it off.”
This child who stands confidently at her favorite toy — her dollhouse — had an incredibly fragile start. She was born with spina bifida.
“Her spine did not form in the first 28 days of pregnancy,” Heather explains, “so before I could even get a positive pregnancy test, this birth defect had already occurred. And essentially she was born with hole in her back.”
At just 30 minutes old, Evie was transferred to Cardinal Glennon Children’s Hospital, and before she was even a day old, she would undergo the first of 12 significant surgeries she has endured in her young life.
“At one, we were anticipating a major, major brain surgery. Evie had been extremely ill her first year of life, to the point that, I am not joking when I tell you we were on a first name basis with the nurses in the ER,” Heather says.
And so when the Morgans began hearing about a treatment showing profound results for other children with spina bifida, they wonderered if it might be an option for Evie.
It’s a therapy that uses stem cells from donated umbilical cords — but it’s not yet approved in the United States.
“I wanted to find a mistake. I wanted to find a negative story,” Joe adds. “I’ve always been the believer that if it’s good to be true, it’s probably too good to be true. And so I worked hard to find a negative story with newspapers and journalists, and I couldn’t find it.”
They consulted some of the nation’s top experts, and found a researcher in California who performs the procedure outside the U.S.
They faced a lot of skeptics, including the medical team in St. Louis they so respect and trust with Evie’s life.
“If the worst that’s going to happen is nothing, then why do we not give her the shot?” Joe explains. And for Heather, “eventually we just had to decide, we have come this far for a reason. We have prayed and prayed and prayed about this, and it is still the answer that we come to at the end of the day.”
With the help of family, friends and the broader spina bifida commmunity, they raised $25,000. In the spring of 2015, they travelled with Evie to a women and children’s hopsital in Mexico.
Looking back, they can even laugh at how absurd it seemed. Joe describes it, “I mean it looked like red Kool-Aid almost. He had it in a cryogenic container that was cold and … when he opened it up it kind of steamed up and he puts it in a syringe, and it’s red liquid is what it is.”
But Joe says what they saw after has made them believers:
“Her feet were ice cold, all the time. Circulation was not there. I would say within a few minutes her feet were warm. She had circulation in her feet, which we had never seen. That was the miracle I needed. Just that. And then you see her moving her toe … so you’re talking 10 minutes and we have warm feet and we’re moving toes, which, for three years that never happened.”
The Morgans say there’s obviously no way to measure what impact the stem cell therapy might have had. But Heather says they know what they see.
“She shouldn’t be doing what she’s doing right now. There’s no other explanation. There’s no medical explanation for it.”
While they might hope for a second therapy for Evie, their focus right now is on raising funds to help other families with their non-profit Evie’s Warriors.