Worthing charity hosts fundraiser for ‘ultra-rare’ Wolfram Syndrome

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A charity is hoping an 80s night will raise funds and awareness for an ‘ultra-rare’ medical condition.

Wolfram Syndrome UK (WSUK) is a Worthing-based national charity helping to fund research and provide support for those affected by the condition and their families.

Chief executive and co-founder Tracy Lynch, 51, is working with tribute band Synthony 101 to host an 80s fundraiser on Saturday, October 30.

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The event starts at 7.30pm at Factory Live in Ivy Arch Road, Worthing. It follows the first-ever global awareness day for WS, which was held on October 1 and saw Tracy working with other organisations to stage the event.

Tracy Lynch with her daughter Jennifer who has Wolfram Syndrome. Pic S RobardsTracy Lynch with her daughter Jennifer who has Wolfram Syndrome. Pic S Robards
Tracy Lynch with her daughter Jennifer who has Wolfram Syndrome. Pic S Robards

Tracy’s 19-year-old daughter Jennifer was diagnosed with WS when she was eight.

Her diagnosis took three years but Tracy said some people are not diagnosed until they are in their 30s or 40s. She added: “WS is an ultra-rare condition, one in 770,000 are affected and currently 80 to 90 people are diagnosed with it in the UK.

“Our daughter’s doctor at Great Ormond Street said he only remembered the condition from a multiple choice question on an exam.”

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The condition has four main features: diabetes that affects the bladder, insulin-dependent diabetes, deterioration of the optic nerve and deafness.

There is also the possibility of the sufferer having neurological problems, anxiety, depression, and loss of gag reflex, according to WSUK.

Tracy, her husband Paul and Jennifer have lived with the condition for the last 11-and-a-half years.

Tracy said: “Watching your daughter’s condition get worse as she gets older knowing there is no cure or treatment is heart-breaking.

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“She never had a normal childhood as her symptoms started to show when she was four years old, with hospital investigations nearly every month from the age of five to try and diagnose her condition, which eventually came three years later.

“Not knowing how much more she will be affected or how long she will be with us means we have to be positive every day and make her life as fulfilling and normal for her as we can.”

The ’80s night will be the fourth event Tracy has held and she said it would be a ‘great night for everyone’.

She added: “Our event will be a chance to get out and listen to some great music from the 80s.

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“We are hoping to raise about £4,000 but even if we get £2,000 that would be brilliant.

“You need to encourage your curiosity and our event is a great way to find out about the rare condition.”

Tickets are on sale from £15 and you can purchase them here.