Raising Money and Awareness for Terminal Juvenile Batten Disease

Posted by on Nov 18, 2013 in Charity Events | 0 comments

Raising Money and Awareness for Terminal Juvenile Batten Disease
Kennedy in the photo booth

Kennedy (front middle) and friends using the Photo Booth at her 16th birthday party

In June 2013 Jason and Heather Hansen received the horrible news that Kennedy, their 15 year old daughter, had been diagnosed with an aggressive terminal illness. Known as Terminal Juvenile Batten Disease, it is very rare disease that only occurs in 2 to 4 of every 100,000 people in the U.S. (Kennedy is the only known case of this disease in Utah).

The disease causes mental impairment, worsening seizures, and progressive loss of sight and motor skills. Eventually, children with Batten disease/NCL become blind, bedridden and unable to communicate, and it is always fatal. Since Kennedy’s diagnosis, she is now fully blind and will need a wheel chair in the very near future.

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Rather than lament their daughter’s affliction, Jason and Heather decided to celebrate Kennedy’s life and throw her the party of a lifetime for her 16th birthday. The event was held at the ballroom at Weber State University, and it included a DJ, a huge silent auction, pizza, ice cream, chocolate fondue fountains, cupcakes, cotton candy, and (of course) our photo booth. Everything at the party was donated, so all the money raised will go to Kennedy’s medical bills. Any money leftover from the fundraising efforts will be donated to a non-profit organization dedicated to fighting this horrible disease.

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We were very touched by the courage of Kennedy and the outpouring of love from her friends, family, and the volunteers. Both Heather and I were struggling to hold back the tears during Jason’s speech, as he shared stories about Kennedy and his gratitude to all that have helped.

If you would like to donate to Kennedy and her cause, follow this link and be sure to “Like” her Facebook page.

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