07 April 2016 - 0 Comments
An upcoming fundraising concert for Muscular Dystrophy Association Of New Zealand Canterbury Branch (MDAC) is a lot more than just a fundraiser. Rage Against The Dying Light 2016 is a fundraising concert and a chance for Jason Beardsley to remember his best friend Kevin Jefcoate, who changed Jason’s life before tragically losing his own in a car accident in 2015.
Jason met Kevin 12 years earlier, when Kevin was already confined to a wheelchair due to the muscle degeneration brought on by Duchenne Muscular Dystrophy (DMD). DMD is a muscle destroying disorder that causes muscles to deteriorate and break down, leading to progressive loss of mobility and eventually full reliance on a wheelchair. There is no cure for Muscular Dystrophy (MD).
As two growing teenagers with similar interests in Rugby League, music and attending live gigs, the pair didn’t let Kevin’s MD stop them from doing everything together. Their can do attitude helped the duo change people’s perceptions of what someone living with a disability is able to do; believing boundaries are only what you let them be.
With this message in mind, Kevin started his own blog in 2014, opening up about his condition and the intense physical and mental struggles that came with living with DMD. As someone living with a disability, Kevin had found his way to contribute to society and was working to change perceptions through his blog.
“Kevin quickly found comfort in being able to communicate his thoughts to the public through his blog; he had found a way to share his message and change perceptions of what it meant to live with a disability,” said Jason.
“I spoke with Kevin just a few days before the accident and it really felt like he had found his calling in life, he had realised his potential as a blogger and was coming into his own,” Jason continued.
Kevin’s life was tragically cut short by a car accident in New Zealand in June 2015, before he had a chance to get his message out to the world. Kevin was killed when a technical failure caused the van he was travelling in to lose control and roll onto its roof. Kevin’s passing was one of the hardest times in Jason’s life and it was this struggle that Jason channelled in order to continue sharing Kevin’s poignant message for the world, captured in the closing of Kevin’s last blog post before the accident:
“I have made the choice to live, to live in abundance and fully. I'll end with a bit of a mission statement. I know that in the end, my DMD wins the day; complications from it will one day take my life. I'm here to tell you it is going to have to do that against my will, I'm going to fight it all the way down. I'll leave this world kicking (ha-ha) and screaming. If this is a fight to the death, I will not go gentle into that good night and I will rage against the dying of the light.”
Using Kevin’s moving message, Jason is hosting the inaugural Rage Against The Dying Light 2016 fundraising concert in Kevin’s hometown of Christchurch New Zealand at Churchills Live on Saturday May 7th. The aim is to have annual concerts in Kevin’s memory, with the charity concerts endeavouring to not only remember Kevin, but educate the community about the progressive muscle destroying disease, perceptions of people living with a disability and promote MDAC’s work within the community.
With an impressive line-up, including Christchurch locals Skelter and the Black Fox Trio, “All funds raised from the Christchurch concert will go to the Muscular Dystrophy Association of New Zealand Canterbury Branch, which will go towards maintaining the number of field workers supporting the needs of over 400 clients in the South Island, enabling those living with MD to live a life with fewer boundaries, just as Kevin did and would have continued to do,” Jason concluded.
You can find more at:
www.facebook.com/rageagainstdyinglight
www.facebook.com/intothedistanceentertainment
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