01:41AM, Thursday 10 January 2013
The parents of a girl with Rett syndrome have vowed to redouble their efforts to help scientists find a cure after the condition claimed the life of another youngster.
Mum-of-two Eylem Selby, whose daughter Erin, eight, suffers from Rett, has spoken after the death of Coleen Rooney's sister Rosie.
Coleen, the wife of Manchester United footballer Wayne Rooney, cut short a holiday to be with her 14-year-old sister when she died on Sunday.
"When you’re told that your child has Rett syndrome, it feels like your world has ended," said Eylem, who is also mum to six-year-old Sofi.
She described Rosie's death as 'heartbreakingly sad'.
"The news makes parents like me more determined than ever to do everything we can to raise funds to keep the research going – until the day they find a cure," she added.
Rett usually strikes down previously healthy girls shortly after they have learned to walk or say a few words and robs them of their ability to talk, walk unaided and hold objects.
Other symptoms include seizures, curvature of the spine, and it can lead to other complications such as strokes, pneumonia, epilepsy and seizures which can prove fatal.
However, doctors have succesfully reversed the conditions in a laboratory and Eylem, who works as an administrator in Maidenhead, said it's important people know about Rett so they can donate to help find a cure.
In 2012 she ran the British 10k and Erin's dad Paul, 44, cycled in the London to Windsor Bike Ride to raise money for Rett Syndrome Research Trust UK. They also held a street party with local musicians, which raised £6,000.
This year Eylem, of Creden Close, plans to walk 60km over the South Downs in West Sussex. She said Erin had a love for music that couldn't be described by words.
Donations can be made at www.reverserett.org.uk or via her fundraising page www.virginmoneygiving.com/team/ReverseRett
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