“She’s my best friend,” says Debby Ebert, Alexya’s mom. “She is why I get up every morning. She may be little, but she is so strong.”
Since birth, Alexya has required more than 250 surgeries.
“It’s kind of like she hears doctors say she’s not going to be able to do something, and vows to do it,” Debby says. “She’s a spit fire.”
Alexya was born with her intestines on the outside of her body. She also has a rare, rapidly progressive form of Marfan Syndrome. Marfan affects the body's connective tissue, which holds all cells and organs. It has far-reaching implications on her digestive system, eyes, and bones. The few others in the U.S. born with the same condition have died by the age of four.
“Six months ago, she stood up to take her dishes from the dinner table and her femur broke,” Debby says. “Your heart breaks, because it’s like how do you help her when you can’t really change it?”
Alexya’s form of Marfan Syndrome is typically genetic, but she was adopted. Debby tells her she grew in her heart, rather than her belly. Doctors told Debby that Alexya probably wouldn't make it to 8 months.
“They told us we had a choice to make,” she says “Either we could walk away, because legally that's not what we signed up for, or continue on. But there was no going back. Alexya was our baby. This is what god brought us, and she's truly a miracle.”
A miracle is what many of Alexya's doctors at Children's Hospital call her.
“We work together, we share notes and we're able to talk and communicate about a really complicated case,” says Dr. Michael Earing. “We take it for granted sometimes because we’re so focused on science and medicine, but the really cool part that I enjoy most, is just watching her be a kid.”
Making sure Alexya has as normal of a life as possible is what Debby and her husband agreed to from day one.
“We said we would take it one day at a time,” she says. “Everyday's a blessing. We also agreed to not keep her in a bubble. We're not going to keep her in the house. We're going to let her do what she can do until her body tells us not to do. And there were a lot of times that happened. She was on the monkey bars in our backyard and her intestines stopped working. We had to take her to the emergency room. The doctor said no monkey bars, so we took them down.”
Doctors can't say how long Alexya will live.
“My hope is that she's going to continue on well into adulthood,” Dr. Earing says. “Her functional quality of life is the key here.”
More time is the goal. “You can't give another, better gift,” Dr. Earing acknowledges.
So far, it’s been the greatest gift of their lives.
“Our love is forever and it always will be,” Debby says, looking at Alexya.
Doctor's say a huge part of Alexya's success is her supportive family. Debby went to nursing school to get her degree, to be a better advocate and caregiver for Alexya.