LAST week Coleen Rooney was left heartbroken when her younger sister Rosie died from a lifelong battle with Rett syndrome.
The rare neurological disorder, mainly prominent in females, causes communication and mobility issues and leaves most sufferers unable to speak.
Gayle and Neil Fowler, of Anglesey Close, Ellesmere Port, are only too familiar with the difficulties of Rett syndrome after their three-year-old daughter Ciara was diagnosed with the condition the day before her second birthday.
Despite a normal development during the first few months of her life, Ciara’s parents noticed she never started to crawl, began to withdraw socially and had difficulty eating.
She showed no interest in toys and became distressed for no reason, regularly grinding her teeth and showing very low muscle tone, meaning she was unable to sit unaided.
Gayle and Neil had never heard of Rett syndrome but, after a series of tests confirmed the toddler had the illness, for which there is no cure or treatment, they were devastated.
The syndrome significantly reduces life expectancy and Ciara faces the prospect of a life in a wheelchair and 24-hour care.
But the setback made the couple, who also have a six-year-old son, Michael, and another baby due this weekend, more determined to raise awareness of the condition, and support charities such as Rett Syndrome Research Trust UK which focus exclusively on finding fast treatments and cures for the disease.
In May, Neil and friend Sion Owen will take on the ultimate challenge to raise funds for this particular charity by doing the ‘Home2Rome’ cycling challenge starting from Chester’s Roman amphitheatre and finishing at the Colosseum in Rome.
The 1,400-mile route will see them cycle 100 miles a day through France, Switzerland and the Alps.
Neil said: “I don’t view this as some life experience or personal challenge – it’s simply a way of trying to ensure a brighter future for my daughter Ciara and other girls who have been diagnosed with Rett.
“When Ciara was diagnosed I felt our world had fallen apart. The thoughts of never hearing her call me Daddy or never being able to play with her siblings and the prospect of never being able to walk her down the aisle and dance with her at her wedding were all at times too much to take.”
Neil added: “The fact a cure for Rett has been discovered on mice means the potential for cure became a real prospect but, as usual everything, comes down to money.
“Rett Syndrome Research Trust UK donates all money to fund this vital research, which is why I wholeheartedly support them.”
Gayle’s friend Tracey Sadler is taking part in a 1,000-mile challenge – competing in races including The Great North Run, the Chester Half Marathon, the Liverpool Half Marathon and the Virgin London Marathon – to raise money.
She’s also arranged a charity night to be held at Whitby Sports and Social Club on Saturday, March 9, which will feature live music and a raffle.
To donate, visit www.justgiving.com/TraceySadler-runningtoreverserett or www.justgiving.com/Neil-Fowler1-Home2Rome-Cycling2CureCiara .