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Callie's Story

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September 13, 2017 | By Brittany Johnson

Callie-resized

Callie Rose was born at 29 weeks, weighing just 2lbs 11oz. Before her first birthday, she was diagnosed with Spastic-Dystonic-Quadriplegic Cerebral Palsy, a condition that affects all four of her limbs, making her muscles tight and causing movement to be hard and stiff. She also suffers from uncontrollable movements.

Dianna McCord, a Pennsylvania Elks Home Service nurse, has been helping Callie and her family since Callie was about 8 months old.

"The Pennsylvania Elks Program assists families in navigating the complex world of having a child with special needs at no charge," said McCord.

"Dianna helps us with everything," said Cindy Rose, Callie's mother. "She helps us find resources such as scholarships and grants to help pay for procedures and equipment Callie needs".

Callie is now 11-years-old and in need of a surgical procedure called Selective Percutaneous Myofascial Lengthening. This procedure is only performed by two doctors in the United States. Callie's insurance will not cover the procedure, so the family, with the help of McCord are currently doing a fundraiser to cover the costs.

"Dianna is much more than just a nurse, she is a friend," said Rose. "I know I can turn to her for anything, even if it seems small."

One of the first things McCord did for Callie was finding her adaptive toys.

"Adaptive toys are very expensive and must be ordered through a special needs catalog," said Rose

McCord attends Callie's doctor visits. She also helps as an advocate at school for Callie's Individualized Education Program (IEP). This means she helps to advocate for the appropriate educational and support plan for Callie.

"Dianna is my sounding board during these meetings," said Rose. "She keeps me calm when the school disagrees with what I know my daughter needs."

Callie is currently in a wheelchair, but her family is hopeful that after she has the surgical procedure her condition will improve.

"Dianna is amazing and I don't know what I would do without her," said Rose. "She sees Callie for who she is without her disability and that is extremely important."