CLINTON – When Scarlett McAlpine came into the world Sept. 3, 2015, she made her entrance about a month early.
Her mother, Stephanie, had had a wonderful pregnancy and Scarlett appeared to be a healthy baby.
“There were no problems,” her father, Vince, recalls. “Everything looked good.”
But just a few short months later, Vince and Stephanie, who both grew up in Clinton but were living with Scarlett in Iowa City at the time, noticed their little girl was not reaching those first milestones that all parents look for and expect.
They soon would learn that Scarlett was displaying symptoms of muscular atrophy, which would end her life when she was just 13 months old.
In her memory, this weekend her family will host a fundraiser for the Muscular Dystrophy Association to help fund research and assist families affected by MD.
MDA of Iowa serves more than 1,700 children and adults across Iowa and western Illinois living with muscle disease, according to Derek Harrigan, an MDA development specialist.
“MDA serves patients and their families in local communities by providing specialized clinics through the University of Iowa Hospitals and Clinics, organizing support groups and educational events, loaning out medical equipment and coordinating repairs to medical equipment, holding an annual summer camp for youth with muscle disease, and serving as an advocate for children and their families in schools,” Harrigan said.
The assistance they provided was a godsend for the McAlpines, who learned of Scarlett’s condition when she was five months old but had earlier suspected their baby girl was showing signs of developmental delays.
“She was kind of starting to not do some of the milestones,” Vince says of Scarlett’s first few months of life. “She was not holding her head up right.”
At this point, the doctors weren’t yet worried. But in February 2016, that all changed. She had just been picked up from day care, when the couple quickly learned that something wasn’t right.
“She was pale, and sick,” he says. Her breathing was labored.
She was sent by ambulance to the University of Iowa Hospitals and Clinics.
While she was diagnosed with RSV, an upper respiratory virus, it became apparent to medical staff members that Scarlett was what they described as a “floppy” baby.
And while other babies would recover more quickly from RSV, Scarlett was having a very difficult time regaining her health, leading doctors to believe there was an underlying problem.
On Feb. 25, 2016, one week after she had been admitted to the hospital, tests came back with the news doctors had been fearing.
Scarlett was diagnosed with Spinal Muscular Atrophy Type 1, a form of muscular dystrophy, that weakened her muscles and prevented her from having the strength to cough effectively and clear her lungs and her airway.
Over the next eight months, the first three of which were spent in the hospital, Scarlett would be treated with morning and night chest compressions, and a cough assist machine to loosen up her lungs and clear them. The goal was to prevent pneumonia.
At night she slept with a BiPap machine covering her nose and mouth. It would in essence help her breathe, allowing her to build up her strength overnight. Her oxygen levels and vital signs were monitored 24 hours per day.
Then in September of that year, Scarlett unexpectedly went into cardiac arrest. She died Oct. 19, 2016.
In the years that have followed, Vince and Stephanie have closely followed the gains made in research and possible treatments to stem the disorder.
They also take part in MDA-sponsored events and this weekend will raise funds through the golf tournament named after Scarlett. The Scarlett Rose McAlpine Memorial Golf Tournament will be Saturday at Valley Oaks Golf Course in Clinton.
There will be a 1 p.m. shotgun start, a bake sale, 50/50 raffle, silent auction and a patio wine tasting. The wine tasting will be from 2 to 5 p.m.
The cost to golf is $60 for nonmembers and $28 for members. Call Jason Luett at (563) 212-5538 to register. All proceeds will go to MDA research and the University of Iowa Children’s Hospital.
Jason and his wife, Marcy, are Stephanie’s parents. Vince’s parents are Brian and Jenny McAlpine of Clinton.
Jason said raising money through a golf tournament was an easy decision.
“The reason why we chose golf is because so many people in our family and so many of our friends play the game,” he said. “We all thought it would be a great way to raise money for SMA awareness and the University of Iowa Children’s Hospital.”