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10,000 dollars raised to help rare syndrome that affects 250 worldwide: one case right here

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POSTED: Thursday, December 19, 2013 - 9:19am

UPDATED: Thursday, December 19, 2013 - 2:23pm

Wednesday was a very special day for the Enlow family. The community came together to donate money to the Pitt-Hopkins Research Foundation.

It's a foundation that is extremely close to their heart, that’s because their daughter is one of 250 people across the globe with this disease.

Carson Enlow is a three year old diagnosed with Pitt-Hopkins Syndrome. Carson will have a major developmental delay, meaning she will need the help of her parents most of her life.

But even though the disease she suffers from is very rare, there is research going on looking to find answers.

A check of ten thousand dollars was donated to the foundation, all raised by a charity golf benefit.

“It means a lot that I can make a difference right here in my community and not only the money but Pitt-Hopkins the awareness of what it is," said golf tournament organizer, Jeff Burst.

"It means a lot and with only 250 cases around the world thee isn't too much awareness and there are not too many people who are donating money but 10 thousand dollars will help quite a bit," said Carson’s father, Mike Enlow

The tournament was the first of what organizers hope to make annual event and Pitt-Hopkins syndrome will be in the rotation for organizations to give back to from now on.

Carson’s father said although it is hard having a child with developmental delays, they believe they were blessed with an angel.

Carson is indeed full of life and laughter despite her setbacks.

Click here for more information about Pitt-Hopkins.
 

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