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Living with Cerebral Palsy: Eloise's Story

 
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Amber Conway, a De Pere, Wis. native, was doing her special education student teaching in England when she met her husband, Paul. In 2010, the two married and became pregnant with identical twins.

“I was in a bit of a shock. And to make it even more of a shock, I found out I had twin-to-twin transfusion syndrome, which is something that can happen with identical twins,” said Amber.

The twins were born at 29 weeks gestation. Felicity weighed 2 lbs 8 oz and Eloise weighed 3 lbs 4 oz. The girls spent the next six weeks in the hospital receiving special care. As they got older, Amber started to realize that the two girls weren’t developing at the same rate. 

At their 3-month check, Eloise still wasn’t holding her head up. At the 6-month check, she still wasn’t sitting up right. They just kept telling me that you’re comparing her to her twin. And I was saying, no I’m not, she should be doing these things,” remembers Amber.

When the girls were 13 months old, the Conways left England and made a home in De Pere. They met with their pediatrician and Amber relayed her concerns. Almost immediately, the pediatrician ordered an MRI and referred them to Prevea Pediatric Neurologist, Dr. Terence Edgar, who diagnosed Eloise with cerebral palsy (CP) at 18 months old. 

Dr. Edgar explained to the Conways that a part of Eloise’s brain was affected during the twin-to-twin transfusion. He told them that it was not a very severe case, but that it would still affect her walking ability and lower extremities. 

“Dr. Edgar helps us a lot in trying to give Eloise the motor control and movement that she needs. He prescribes braces that help give her the support in her legs so she can move,” said Amber. “He also gives her Botox injections every few months in the back of her legs, hamstrings and sometimes her calves to allow her muscles to relax a little so they’re not so tight which then gives her more movement.”

Eloise, now 5 years old, has realized within the last year that her legs don’t work quite like everyone else’s, but she doesn’t let that stop her. 

“Eloise is one of the most kind-hearted, sweet, sincere children you’ll ever meet. She knows she can’t run and keep up with the other kids, and when she falls, she gets right back up,” said Amber.
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