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This fundraiser ended on 09/14/12

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The family and friends of Kelley Sperry are uniting to raise money for medical costs! Please show your support.

The family and friends of Kelley Sperry are uniting to raise money for medical costs! Please show your support.

Half of our daughter's face and brain are wasting away due to a rare disease called Parry Romberg Syndrome.

Kelley will turn 21 in a few weeks. She has endured 5 reconstructive out-of-state facial surgeries to rebuild her face, which continues to lose soft tissue, muscle and bone. Her front teeth are now loose, as there is little bone left in her jaw to keep them in tact. This will require more extensive and painful bone reconstructive surgery in the near future. PRS is also causing severe migraine headaches...something she's learned to live with for many years.

Within the past 3 years, Kelley has been faced with even bigger challenges associated with Parry Romberg Syndrome. She's had several strokes, due to atrophy in her brain, causing frequent and serious seizures. She could no longer work as a CNA, and lost her ability to drive. Her independence was lost and she became very depressed.

Kelley spent most of April and a good part of May in the hospital with uncontrollable seizures.(sometimes over 50 a day!) After months of trial and error, we were able to find the right cocktail of expensive drugs to keep the Grand Mal seizures at bay. She's been doing a little better with the help of Physical Therapy, as she lost her ability to walk for a few months due to weakness and focal seizures in her left foot, leg and sometimes the entire left side. She also broke her ankle in a bad fall requiring surgery.

Unfortunately, the drugs are a temporary fix. Doctors are testing and preparing her for brain surgery within the next upcoming months to remove that section of her brain causing the problems with the hope that the benefits will out weighs the risks.

We lost our home and are now renting. We decided as family that I would put my teaching position on hold to be home with Kell.

Through all this, Kelley remains positive and upbeat on most days. Her sense of humor kicks in during those very scary times, which puts us all at ease! Her siblings rally around her and she's a joy to care for and easy to love! Dad, a firefighter/paramedic, is her rock!

If you are interested in learning more, please free to Google: KELLEY SPERRY to see her articles and Denver 9 news story which helped us spread awareness about this cruel disease.

In between hospital visits and surgeries, we try hard to enjoy and appreciating the good days. We've had a few of those lately! We've had amazing support and our family, friends and faith are helping us through this walk.

Thanks so much for taking the time to read our story.


Donna Sperry
(Kell's mom)
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