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Rachel's Story

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September 20, 2017 | By Brittany Johnson

Rachel

Rachel Polen is a 20-year-old woman who was diagnosed as an infant with Rett Syndrome, a rare genetic mutation that effects brain development.

Rett Syndrome is most common in girls. Infants with Rett Syndrome seem to develop normally and reach the developmental milestones such as rolling over and crawling, but at about a year old, the child will start to rapidly decline, losing coordination, speech, and the ability to use their hands.

In January of 2000 when Rachel was just 3-years-old, Dianna McCord, a nurse for the Pennsylvania Elks Home Service program started working with Rachel and her family.

"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 from finding resources, funding, and equipment, to advocating for Rachel's needs," said Jody Polen, Rachel's mother.

The first thing McCord helped the family with was finding diapers for Rachel that were covered by their insurance.

McCord is Rachel's Individualized Education Program or IEP advocate at her school. This means she helps to advocate for what Rachel needs to be successful and happy in school.

"Dianna keeps me calm during the IEP meetings," said Polen. "It's very upsetting and frustrating as a parent to know what your child needs, and keep hearing 'no'."

Dianna is currently helping Rachel's family obtain guardianship for her.

"Getting guardianship for Rachel isn't a simple or cheap task," said Polen. "The courts want $3,000- $5,000 to start the process."

Since Rachel is 20-years-old, she is considered an adult, but because of her medical disabilities she is unable to make legal or medical decisions for herself, therefore a guardian would be able to make those decisions for her.

"Dianna and the Elks Home Service program have been amazing," said Polen. "I don't know what I would do without Dianna's guidance and support."