Amy’s rare disorder won’t stop her sailing ahead

Amy Stannard

Amy Stannard

Meet fearless Amy– the woman with an extremely rare incurable genetic disorder who has vowed not to let her disabilities stand in the way of her passion for sailing.
Amy Stannard, 28, is one of only 60 people in the country to suffer from Alstrom syndrome – a condition she has had since birth.
Despite being born blind, mostly deaf and with failing organs – this “astonishing” woman is determined to make a splash.
Miss Stannard, of Bramley, said:  “I have Alstrom syndrome. It is extremely complicated. I am totally blind, I have some hearing but near enough nothing, and it has affected many of my organs including my liver, kidneys and heart.
“But it won’t stop me. When I get out on the water, all I feel is excitement.”
Miss Stannard has long battled her condition but is willing to give anything go, with the dangers of the waters not scaring her one bit.
She jetted out on one of Leeds Disability Sailing Club’s dinghies on a sun-lit Tuesday afternoon.
Miss Stannard said:“I used to sail when I was at John Smeaton School. We used to do it with the Otley Sailing club. They took a few of us out every couple of weeks to join the disabled group as often as possible.”
Norman Stephens, 73, a senior instructor at the club said: “She is willing to give just about anything a go. She used to come once a week and go on the wayfarers.  This is a lady that is absolutely fearless. She was always something of a character and her enthusiasm is nothing short of astonishing.
“One time we enjoyed a laugh when we were out on the water together and the ship capsized which left us under the sail, and she coped with it better than I did”
At a very young age Alstrom sufferers develop nystagmus, an involuntary eye movement that renders the child extremely sensitive to light.
The disease is untreatable and most cases patients lose their sight completely before 18-years-old.
Sailing was one of the choices available at the Leeds Disability Sailing Club hosted open day that allowed disabled people of varying age groups to give outdoor activities a go free of charge
Ross Bibby, Disability Sports Officer for Leeds City Council, 30, said: “It is an opportunity for disabled people to come try things out. We have sailing, kayaking, canoeing and a variety of other activities that any disabled young people or adult can attend.
“Following this week the activities will become a regular fixture, with sessions every Tuesday at the club. Amy was definitely one of the keenest to book. She is incredibly chatty and it is a pleasure to have her here.”
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