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Unbreakable Love: Local Toddler Continues to Struggle with Life-Threatening Disease

September 24, 2018 10:39 PM

(ABC 6 News) - Our homes are all filled with delicate items, like China, or vases; but all can be replaced in some way.

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However, one breakable thing in the Butts household is one of a kind.

We first introduced you to Ellie last summer. She was born with osteogenesis imperfecta, better known as brittle bone disease.

“They’ve actually said she’s the most fragile case they’ve actually handled,” Ellie’s mom, Terrye Butts said.  

Throughout Ellie’s young life, she’s already experienced about 100 broken bones. The loving Butts family is concerned about the evolving problems with Ellie’s fragile structure. Even a failed attempt at getting out of a chair could end into the hospital, or worse.

 “With her spinal stenosis, Ellie has a narrowing of her spinal canal,” Terrye Butts said. “So if she were to jerk wrong or fall or get injured in that sort of way, it would instantly kill her.”

“At this point, we know it’s not a matter of if, it’s a matter of when she’ll need a full spinal fusion,” Ellie’s dad, Brian Butts said.  

“In patients with osteogenesis imperfecta, their bones are not just brittle, but they’re also relatively soft,” Mayo Clinic pediatric orthopedic surgeon, Dr. Anthony Stans said.

ABC 6 News caught up with Ellie’s doctors, Dr. Stans, and Dr. Peter Tebben to learn about the severity of Ellie’s evolving condition. They’ve been taking care of Ellie for the majority of her life.

“The cervical spine can slowly move up into the bones of the skull itself, or it can move up into the opening of the base of the skull where the spinal cord and brain stem live,” Stans said.

Ellie’s spinal specialist in Delaware also said if her spine is squeezed too much, she could even become a quadriplegic; which is why she now wears the neck brace to slow those potentially life-altering effects.

“Most of the spine surgeries that we do for deformity affect growth,” Stans said, “so we’d like to get as much growth as reasonably possible before doing surgery. Ellie’s not there yet and we’re trying to delay that as long as possible, but there’s a high likelihood that that’s in her future sometime.”

Ellie’s continuously getting treatment to strengthen her bones as she grows.

“The medication she takes for her bones is an infusion every 3 months for the first 2 years of life and then after she’s two, it’ll be every 6 months,” Mayo Clinic Endocrinologist Peter Tebben said. “Are there better treatments? There are ongoing clinical trials, Ellie doesn’t qualify for any of those at this point, when she’s older she may, but I anticipate we’ll have better treatments in the future.”

“Unfortunately, it’s us against time,” Brian Butts said. “Her bones need to get stronger, she needs to get a bit bigger before they can do it, they can do it in the event of an emergency to save her life, but we’re kind of on hold right now.”

But with as many physical complications that could keep this little girl from walking, Ellie has managed to use a wheelchair to help her get around, including one imported all the way from Europe.

“I don’t want to put limits on him,” Ellie’s big sister Caylee Butts said. “I just love her independence and what she’s able to do, she’s so small, yet she can do a lot of things.”

The Butts family said it’s really Ellie’s laugh that helps them get through each day.

 “When I get to come home, I get to see her sitting in front of the door in her wheelchair, waving at me, and just smiling, making me so happy,” Caylee Butts said.

“You may be having the worst day ever, or maybe the worst two weeks ever when she’s broken, but just waiting for her to trigger that smile,” Terrye Butts said.

“Just coming home from work every day and seeing her smile, even on her bad days she always puts a smile on my face and always turns a bad day into a good one,” Brian Butts said.

And in the Butts household, where you’ll find many things made of glass, there’s really only one precious thing that’s absolutely irreplaceable.

If you’d like to donate to the Butts family and help out with Ellie’s medical bills, you can go to the Accentra Credit Union in Austin and say you’d like to donate to the “Ellie Butts Benefit Account.”

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