Weston-super-Mare man to hold variety show to shine a light on rare illness
PUBLISHED: 16:00 09 April 2018 | UPDATED: 16:10 09 April 2018
A Weston man hopes to raise awareness of a rare condition which left his niece ‘unable to carry a cup of tea’.
Paul Howe has watched his niece Victoria Bull, aged 32, suffer for years with Friedreich’s ataxia as her muscles began to deteriorate.
The neurological conditions which gradually attacks the brain and can cause problems with balance, speech and co-ordination in the early stages before leading to heart disease, diabetes and loss of bodily functions.
Mr Howe has decided to take action into his own hands and raise money and awareness for the rare condition through a big variety show.
He said: “Watching Victoria suffer for years with gradually deteriorating muscle problems in her legs, and later her hands, to the point where she was unable even to carry a cup of tea safely from the kettle to the table, really hurt.
“What was almost as frustrating during that time was her doctors were unable to diagnose her condition.
“It wasn’t until more than 10 years later, and after extensive checks, tests and visits to her local surgery and various hospitals, that her condition was finally diagnosed as Friedreich’s ataxia.
“We discovered her condition, which indeed tends to affect all the muscles throughout her body, only gets worse.
“Its cause is hereditary and there’s no cure.”
Before contracting ataxia, Victoria, who is from Milton Keynes, had a ‘happy and active family life’ and looked forward to a ‘bright future’ is now ‘losing hope’ and ‘her fight’.
The retired teacher, with the support of his friend Perry March, hopes to raise hundreds of pounds through the event which will show case a ‘spectacular’ array of talent with acts performing singing, dancing and magic routines.
Illusionist Prince Nadin, a semi-finalist on Britain’s Got Talent, and Dave Christian, a renowned mentalist and magician, will top the bill on the night.
Mr Howe said: “I am delighted to be putting on this variety show on behalf of Ataxia UK.
“Not only is it a cause close to my heart but it is also set to be a fantastic show, packed with amazing local performers.”
The show will be held in the Grand Pier’s Regency Suite on May 18 from 7.30pm.
Tickets, priced £15, are available from firstname.lastname@example.org or from the Crosspatch Craft Shop in Meadow Street.