Family trying to raise awareness of Deletion Syndrome

"Sammie wears hearing aids, but in some kids, their hearing is completely fine," she continued. "Somewhere in his missing genetic information is obviously some part of his hearing."

Because so much is still unknown about 1p36, Shannon and Steve are behind efforts to fund research and provide educational materials for families with loved ones who have the condition. The two have gotten on board with a movement to get a $50,000 grant for 1p36 Deletion Support and Awareness through the Pepsi Refresh Project. The process involves members of the public voting on-line and through text messaging for their project. If the project is among the top 10 voted for at the end of the month, the project will be funded.

"The whole 1p36 community would just be ecstatic," Shannon said of the project being funded. "Being able to create something that could maybe give a family a little bit of hope at what could be possibly the worst time in their life I think would be fantastic."

The money, said Shannon, would be also be used to design and build informational exhibit for national conferences on 1p36, which are critical to keeping up-to-speed on research of the condition.

"I think it would just do a lot to ease the minds of a lot of people just to know what they're dealing with," Steve said of how the funding would be used.

If the project isn't funded, all hope is not lost, said Shannon.

"We'll just continue to do small fundraisers until we get there," said Shannon. "If we don't make it, at least we're raising awareness. We're getting the word out there."

(Editor's Note: To vote for the 1p36 Deletion Support and Awareness project on-line, visit www.refresheverything.com/1p36. More information about the condition can be found on-line at www.1p36dsa.org.)

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