Eight-year-old Hadley looks and acts like other little girls. She enjoys coloring with her older sister Stella, playing with dolls, convincing her dad to play makeup and snuggling her pink unicorn “Candy Heart.”
As she prepared to be recognized as this year’s Idaho CMN Champion on Valentine’s Day evening, she seemed anything but ordinary.
With the help of her mother, Marcu Alexander, she administered several syringes of medicine through her gastronomy tube, or G-Tube, affixed at her stomach, before sneaking off to grab a cookie and chase her cousins around the hotel conference room. As an infant, she was diagnosed with a rare, incurable metabolic disease.
Each year, Children’s Miracle Network Hospitals select a young person from each state to serve as its “Champion” ambassador. As Idaho’s only Children’s Hospital, St. Luke’s Children’s Hospital is represented, choosing a spokesperson who shares about their personal health experiences and raises awareness and money for medical services provided at CMN Hospitals.
This year St. Luke’s chose Hadley Alexander as the 2019 Idaho representative.
Hadley was born a healthy baby. For six months, she maintained a healthy weight and was hitting her developmental milestones.
“She was 21 pounds at six months,” Marcu shared. “Then it stopped.”
“Having Stella (their oldest daughter) a year and two days apart, we were expecting certain milestones because they were pretty fresh in our minds,” father Ben Alexander shared. “When they weren’t happening, there was cause for alarm. We started seeing specialists for hopefully some insight on what was happening. We left most all of those visits without answers.”
“The biggest warning sign for us,” Marcu said, “is that she refused food. She would drink milk because she was so dehydrated, but she didn’t eat.”
“Her motor skills were lacking,” Ben said. “She developed rickets and then a stomach bug that caused her to get really sick.”
They went to Seattle Children’s Hospital for more testing.
“Her blood levels were way out of whack,” Ben said. “We knew something was wrong, but we couldn’t tell what, so we were sent home again. Our general pediatrician looked at the lab results and suggested we see a pediatric nephrologist.”
The family went back to Seattle where the nephrologist recognized the symptoms as Cystinosis, a rare, incurable metabolic disease that affects every organ in the body.
“Because it’s a genetic disease, (patients) have a lot of the same characteristics,” Marcu said. “They’re little, blonde and have a lot of the same histories, so she recognized it and assumed that’s what we were dealing with.”
Several specialized blood tests later and the suspicion was confirmed.
“It was empowering because we could actually get her treated,” Marcu said. “She went in and got her G-tube surgery and started getting her medication and immediately started growing and walking.”
Hadley’s care continues, requiring several blood tests per year to check her status and adjust her medication as needed.
“We had wanted to move to Idaho for some time but after diagnosis we didn’t know if she could receive the quality of care,” Ben said. “We had done research prior to moving to find out whether or not she could get the treatment she needed. We found out that St. Luke’s had all the capable doctors that she required and that they had a history with Cystinosis as well. We felt really safe.”
The move has been good for Hadley, too.
“All of her doctors work together and speak together,” Marcu shared. “I feel even better being in Boise than Seattle because everything’s accessible and I can easily contact her doctors. When we have a problem it’s easy to get into the doctors. We feel really lucky that we’re here.”
“We have a nonprofit in Idaho called Hearts for Hadley,” Marcu said. “100 percent of the money we raise we donate to the Cystinosis research foundation in California. This will be an extension of that to raise awareness. Our goal is that no child has to wait to get diagnosed. The longer it takes, the more damage it does to the body.”
The timing couldn’t be better for the community.
“In January, the FDA approved a stem-cell trial for Cystinosis,” Marcu explained. “If all things go as planned, two adults will have a cure this year using their own stem cells but modifying the defective gene and getting it re-introduced. This is a huge, pivotal year. It’s exciting to be able to talk about what’s going on as it’s happening.”
Hadley was all smiles as her sister handed over her “Champion” medal and posed alongside her family along with Miss Idaho and Miss Teen Idaho who both visited her on her special day.
Hadley will participate at the upcoming Boise State Dance Marathon event, and will be spokesperson for CMN, St. Luke’s Children’s Hospital and Cystinosis throughout the year.
Alexis Bennett is a consultant for St. Luke's Center For Community Health.