Hitchin theatre to host star-studded UK premiere of film The Ataxian
PUBLISHED: 16:57 18 August 2018
Hitchin’s Queen Mother Theatre is to host the star-studded British premiere for a feature-length documentary about an incurable disease affecting a local family.
The UK premiere of The Ataxian, about a long-distance cyclist with Friedreich’s ataxia, is to be held on September 1 – with celebrity guests including comedian Hugh Dennis and actors James Moore, Bob Barrett and Sally Bretton.
The moving film follows Kyle Bryant as he and three friends take on the Race Across America, from California to Maryland – inspiring others along the way.
Proceedings from the premiere will go to help ataxia research.
The premiere has been organised along with charity Ataxia UK by a Hitchin family whose daughter lives with ataxia. They wish to remain anonymous.
The girl’s mother told the Comet: “My daughter had never been strong or sporty.
“She was very slender and had some hypermobile joints. At seven, her walk became odd. We saw a consultant who failed to examine her properly and declared nothing wrong with her.”
When she was nine, they looked into whether she might have dyspraxia – and a year later a paediatrician realised something was very wrong. After many tests, she was diagnosed with ataxia.
“Her form of ataxia is genetic, degenerative and life-limiting,” the girl’s mother said.
“The futures we had planned are gone. We’ve had to watch her struggle to walk, and start using a wheelchair. We see her upset and unable to do the things her peers do. At a time when kids her age are gaining independence, we worry about leaving her home alone. Ataxia affects balance, strength, speech, sight and hearing. It can give you foot deformity, scoliosis and heart disease. It’s usually the heart disease that causes early death.
“There’s no cure or treatment, but a great deal of research is going on all over the world. We have to make the best of things, have fun and fill her life with new experiences. It’s hard to do that when you’re heartbroken.
“This is why we decided to hold this screening. It’s so important to not only raise awareness but to fundraise for Ataxia UK, who are working with the Friedreich’s Ataxia Research Alliance in America to find a cure.”
Some 10,500 people live with ataxia in the UK, of whom 500 are children. To find out more, have a look at ataxia.org.uk.
Tickets for the film are available from 07709 872934 or firstname.lastname@example.org.