Rory Motor Neurone Disease Association of NSW (MND)
Motor Neurone Disease Association of NSW (MND)

My Story

My name is Rory Chapman and on the 26th of July 2015 I am paddling from Molokai Island to Oahu island in Hawaii, a distance of 52 kilometres.

WHY I chose MND as a charity to donate to: Like most people I had little knowledge about MND until my brothers girlfriend told me her story. Her story was about her brother and his battle with MND. Her story was so touching and eye opening that I felt that I would like to make sure that people are aware of this disease. When I decided to paddle in this race I also decided I would like to raise money and awareness for MND.

Emily has so Kindly allowed me to share her story with you:

Elliot Jay was diagnosed with MND at only 18. After an 8-month battle he died aged 19 in April 2008. Elliot’s story defies the myth that MND only affects older people.

It was February 2007 and Elliot was just starting a business degree at Uni, working one day a week in a reputable Financial Advisory firm. He began to fall over uncontrollably, as his legs would collapse from under him and he struggled to walk up small stairs. On his last day when my Dad dropped him off at the front of the firm, he limped to the stairs, stopped at the base of them for a few moments, then turned, struggled back, eyes filling with tears, removed his tie and said
“take me home.” He was never to return. In his first semester of university his friend would make jokes with him because he would take the elevator for only a small flight of stairs. He was walking down a popular street lined with cafes with his mate when he fell over. Onlookers thought he was drunk. With the help of his friend and a stranger he got back up. Little did we know this weakening of his left calf was the beginning of our tragedy.

Elliot’s condition deteriorated rapidly. By June he was in a wheel chair. It was not thought at this point that he had MND. From the onset it was a case of trying anything and everything. My parents were exploring every path of mainstream and alternative medicine in order to achieve some improvement. They travelled frequently to Sydney and other parts of the country and even considered an overseas trip to meet with doctors and healers. No measure was left untested and Elliot went along with it, with barely complaint or objection, he gave it his all. He would have massages and saunas regularly, and private Pilates instruction daily in hope of bringing some strength back to his young fragile body.

In January 2008 after tests showed his breathing capacity had ebbed to almost nil, he said “it’s not about giving up or throwing the towel in, it’s about acceptance.” He was right and he from here on Elliot brought all of us friends included, to the same point, so that he could do what he wanted to enjoy the here and now. From this time forward Elliot created another world. He received and played host to an endless stream of visitors, retaining a positive outlook and enthusiasm for whatever he was able to engage in. He created two fabulous living reef aquariums in his room, that he could oversee and enjoy. His walls were covered by art, done by family and friends and he even painted canvases for many with his mouth. Right to the end Elliot ensured there was music or some form of entertainment, always food and copious quantities of sweets and chocolates.

It is said the real test of a person’s character comes from adversity. What adversity Ell had confronted and handled with great courage, grace, humour and wisdom, and exceptional selflessness.

Let’s raise awareness and funds so that suffers of MND do not need to accept this horrible fate. Let’s work towards a cure so that we can lay the stones for a path of good health and happiness.
- written by Emily Jay

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Motor Neurone Disease Association of NSW (MND)