In a FaceBook post dated May 27, Kevin Jess, a Huntington’s Disease activist and care giver posted a video to his FaceBook page entitled Huntington’s Disease Dance Challenge.
In the video Mr. Jess talks first about Huntington’s Disease and how it is known as the “monster of all diseases”. He then speaks further about his wife who is in the final stage of the disease for which there is no treatment or cure. His wife Sheila, who has suffered with HD for the past sixteen years had become reclusive and many people had not seen her in many years, so he warns in the video that viewers who knew her might be shocked at her decline.
His plan was to have her come into the video and dance with him to music that was “our song” since before they were married 35 years ago. Ms. Jess can no longer walk so he explains that he will have to hold her up in order for her to dance.
The result is tear jerking to say the least.
“My intent was not to upset people. It was simply to show a part of what HD does to a person and their loved ones”, he says.
During the short slow dance you can see her legs weaken and eventually he places her gently back into her wheelchair where only a couple of minutes before she had outstretched her arms, now very thin, for him to pick her up to dance.
Mr. Jess says, “When I watched the video back, I cried. I knew it was sad, but it was also very powerful. I debated with myself about posting it but I so needed to try something to not only try to raise funds for Huntington’s Disease charities but also to bring about awareness. So many people have no idea what HD is!”
Part of the dance challenge is to nominate people to take the challenge or make a donation to a Huntington’s Disease charity. One of those nominees was James Valvano, founder and President of WeHaveAFace.org, a charity devoted to broadening awareness of Juvenile Huntington’s Disease and Huntington’s Disease. “Challenge accepted my friend. I just love what you guys did with the dance video,” was Mr. Valvano’s reply in just a matter of a few hours.
Others have come forward as well taking up the challenge without having a nomination so June will most likely be filled with music and dance to make more people aware of HD.
Mr. Jess is reaching out to people to go ahead and post videos of yourself dancing, no matter how silly, funny or even sad. “Do it for those folks out there who are suffering the unimaginable,” he says.
Mr. Jess was contacted May 29 and has been named Patient Advocacy Advisor to WeHaveAFace.org.
