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Dad's 14-day cycle marathon to help fight rare condition

Published date: 16 May 2014 |
Published by: Steve Creswell
Read more articles by Steve Creswell


 

A DAD will cycle through 14 countries to raise money to battle a rare disorder that has left his daughter unable to speak or to feed herself.

Neil Fowler, 41, a physiotherapist at the Countess of Chester Hospital, says he worries every night his beloved daughter Ciara, five, may not wake up the next day.

The youngster has Rett Syndrome, a genetic disorder that affects one in 12,000 girls and causes severe physical and mental disability.

Mr Fowler, a father of three from Ellesmere Port and married to Gayle, is setting off from Glasgow on June 1, and hopes to reach northern Italy 14 days later, travelling through Northern Ireland, the Republic of Ireland, Wales, England, Holland, Belgium, Luxembourg, France, Germany, Austria, Liechtenstein, and Switzerland.
He is now appealing for sponsorship in a bid to raise thousands for charity Reverse Rett, which aims to find better treatment and ultimately a cure for the condition.

He said: “I don’t view this as some life experience or personal challenge, it is quite simply a way of trying to ensure a brighter future for my daughter and other girls who have been diagnosed with Rett Syndrome.

“Ciara is still unable to sit unaided, cannot talk, cannot feed herself, cannot purposefully use her hands and cannot communicate her thoughts and feelings as she would like. She is on long term antibiotics for her chest. We constantly worry about her future and each night when we put her to bed I still think to myself, ‘I hope she wakes in the morning'. When I hear her laughing the following morning then briefly, all is good.”

For the first six months of her life, Ciara appeared to be developing normally, but soon after her parents began to spot warning signs.

“She never started to crawl, began to withdraw socially, had no interest in toys, would constantly grind her teeth, and would become anxious and distressed for no obvious reason,” said Mr Fowler.

“She also had difficulty eating food and exhibited extremely low muscle tone which caused her to be floppy, preventing her from being able to sit unaided.”

Ciara underwent 18 months of tests and scans until a consultant geneticist confirmed she had Rett Syndrome.

“It was devastating news,” said Mr Fowler. “But despite her disabilities she seems to be generally happy. Her smile melts my heart every time.

“She loves watching TV and her favourite foods are her daddy’s spaghetti bolognaise and Sunday dinners.

“Life for Ciara must however be extremely frustrating at times. We can see her observing the world around her and watching other children her age playing together. It breaks my heart that she can’t join in. She loves interaction with other children and we can clearly tell she wants to be involved more in the world around her than her body will allow.”

He urged as many people as possible to back him by donating at www.justgiving.com/TeamCiara
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