The mother of a Suffolk teenager who died from a rare disease has presented the hospice that cared for him with equipment that became his “lifeline”.
Scott Hawksworth, from Orford, was one of only 12 people in the world to suffer from juvenile motor neurone disease – a degenerative illness that first robbed him of his mobility and then in March, aged just 18, his life.
But even as the aggressive disease took hold, Scott was able to find empowerment through the Eye Gaze - an eye-operated communication and control system which allows people with disabilities to interact with the world.
Using the device, Scott was able to play games, call his friends, and even design a model tank engine. He was so impressed with how it helped him live his life that he started raising money to buy one for the St Elizabeth Hospice in his name.
On Thursday, Scott’s mother Tina Ashford presented the Eye Gaze to hospice staff as a legacy for her son and a thanks to those who cared for him and allowed him to remain at home with his family.
She said: “Because we live in a very rural location in east Suffolk, we never imagined we would be able to look after Scott at home, right until the end. However, with the support of the hospice and its flexible community team, we were able to do just that.”
Tina said that when the disease developed it was “quite aggressive and seemed to come in waves, getting worse each time”.
But with help from the hospice Scot was able to stay at home “as he so desperately wanted”.
“We even organised for a hot tub to be installed in the garden as Scott derived so much muscle relief from sitting in this,” Tina said. “Scott’s dad, Eric set about raising money for the hot tub project by cycling from The Belfast in London to his local pub, in Orford.”
“The money raised covered the groundwork, installation and decking around the tub but it was Scott who designed the whole hot tub area, complete with the decking upon which it sat. Amazingly, he did this using the Eye Gaze.”
“You could never feel sad and down when in the hot tub with Scott.
“He would often have a massage afterwards too which was so therapeutic for him; he continued to use the tub right up until two weeks before he died.”
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