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You are here: Home | Magazine | Holidays/Events | Outstanding Family Awards 2010 | Candis Outstanding Family of the Year Awards 2008 | North East Regional Winner

North East Regional Winner

The Vasey family from Burniston, Scarborough

On discovering two of their sons were suffering from a rare genetic disorder, Sue and Brian Vasey vowed they would enjoy as much quality of life as possible - whatever it took. Unlike their brothers, Alex, now 19, and Rio, ten, both Curtis, 16, and Taylor, 14, suffer from Alstrom Syndrome, an inherited disease marked by blindness, deafness, diabetes, the tendency to become obese and reduced life expectancy.

"The boys were toddlers when doctors told us about their condition," says Sue. "Finding out they would never be able to see, and might not live to be adults was devastating, but our immediate reaction was to do everything in our power to help them."

After discovering that maintaining a high level of fitness could help delay the progress of the condition, Sue and Brian trawled their local area for sporting activities for the visually impaired. With no such provision available in Scarborough where they live, the couple had to make weekly 200-mile round trips to enable their sons to take part in sport, often taking children from other families with them. Not surprisingly, such mammoth journeys took their toll. With two other boys to care for and a wholesale confectionery business to run, after six years, in 2005, the couple decided to set up their own group, Scarborough Actionnaires, to provide multi-sports sessions for blind and partially sighted children.

"It was hard work as it took a lot of organisation," says Sue. "But it was better than all the travelling!"

Hundreds of families have benefited from the group, not least the Vaseys themselves - over the years, both Curtis and Taylor have maintained a healthy weight and with Sue, Brian, Alex and Rio's help, manage to exercise every single day.

"Alex and Rio are great," says Sue. "Anything Curtis and Taylor need, they're there, from helping them clean their teeth to kicking a ball around. And I'm proud of Curtis and Taylor too. Considering what they deal with, they don't complain."

Looking to the future Sue says, ?"At the moment Curtis and Taylor are well, but the prognosis isn't good. In addition to other health problems, Alstrom can also cause major organs to fail, which is a frightening prospect.

"But we don't dwell on the possible hurdles of the future because we know that, as hard as it gets, we can get through it together."