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Kid Captain: 6-year-old fights on

BY EMILY FRIESE | SEPTEMBER 13, 2013 5:00 AM

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Partaking in respiratory treatment to keep her lungs strong, and relying on a power wheelchair to get where she needs to go, 6-year-old Stella Turnbull’s daily routine is a little different from that of most children her age.

Her day’s nutrients are received through a feeding tube, and a ventilator is used to help her breathe.

Stella originally was a healthy baby, yet one month after she was born, things began to change.

She lost all of her muscle tone, and she was what her mother, Sarah Turnbull, referred to as a “floppy baby.”

“We brought her in to the hospital, and everyone was perplexed,” she said.

At that point, Pella, Iowa, residents Sarah and Travis Turnbull drove to Mayo Clinic Health System to find out what Stella’s condition was.

After a week of tests, doctors diagnosed Stella with spinal muscular atrophy type 1.

Doctors said Stella was the weakest such patient they had seen, and they gave her about a week to live — a month at the most.

“It’s pretty hard to digest, when you just brought this beautiful little girl into the world and you’re given absolutely nothing you can do to help her,” Sarah Turnbull said. “They actually told us to take her home and love her as our prescription.”

Determined not to give up, her parents researched spinal muscular atrophy cases and found some similar to their daughter’s, which they said gave them hope to keep pushing forward.

“If others could to this, so could Stella,” Sarah Turnbull said.

She said she has heard things about the University of Iowa Hospitals and Clinics and decided to give it a chance.

“[UIHC] had dealt with those who have SMA type 2 [less severe] who are stronger,” she said. “We started in the preliminary departments and brought our research together to try different things.”

Travis Turnbull said the process has assisted Stella’s doctors in learning more about how to help children with spinal muscular atrophy type 1.

“He can take those things and apply them to other kids,” he said. “He’s seen kids with SMA, but we’ve been learning together.”

UI Associate Professor of pediatrics Tim Starner, Stella’s doctor at the UIHC, had not returned calls seeking comment as of Thursday evening.

In addition to Starner learning from their daughter’s condition, Sarah and Travis Turnbull also hoped to educate the public further.

Upon hearing the UIHC was taking nominations for the UI Children’s Hospital Kid Captains, the pair opted to apply — not fully realizing the benefits that could come from it.

After UI officials went through 462 nominations, Stella was announced as one of 14 Kid Captains for the 2013 Hawkeye football season in August, representing the Hawkeyes during the Iowa-Iowa State game.

“She deserves it, but it’s also raising great awareness for her disease,” Sarah Turnbull said.

Sara Blom, Stella’s teacher, that she is excited for Stella to have this opportunity.

“She has an amazing story and continues to affect everyone she meets,” Blom wrote in an email.

Despite having spinal muscular atrophy, Stella is just like any other 6-year old girl who loves Taylor Swift and going on spring break in Florida.

“She’s very social and is very excited to be in that environment — and what a great game to be a part of,” Sarah Turnbull said. “She’s excited to wear her Iowa cheerleader uniform Friday at school. Her entire class is dressing up in Iowa team colors to support her.”

Travis Turnbull said Stella and her disease have changed their family’s perspective on life in many ways.

“Everybody has bad days, but for us, a bad day would be losing our daughter, and we’re reminded of that every day,” he said. “We’re thankful for Stella and our two boys.”

Today, the Turnbulls work with other families going through similar challenges, and they continue to overcome difficult times together.

“When you get news you don’t expect and feel like there’s no hope, I encourage you to look a little harder,” he said. “There are good things that come out of not so good situations. You have to have hope.”


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