Balloons for hope of cure

Aimee Lloyd Nightingale, four

Aimee Lloyd Nightingale, four

Balloons were released near Preston Docks to mark the day a young girl was diagnosed with a rare genetic condition, as a symbol of hope to find a cure in the future.

Aimee Lloyd, five, of Ashton, Preston, has Rett Syndrome, a severe disorder which affects her physically and mentally.

Aimee cannot sit unaided, speak or walk and is prone to seizures, scoliosis, anxiety, growth failure and severe digestive problems.

To mark four years since her daughter was diagnosed with the condition, Jill Nightingale held a balloon release at Baffitos at The Waterfront to signify the day with positivity and hope for Aimee’s future, as well as raising further money for research into Rett Syndrome.

Jill, 38, realised there was something wrong when Aimee was not developing as she should and was on the point of crawling and sitting up when she seemed to go backwards.

Aimee also used to constantly wring her hands - something her parents later realised was one of the symptoms of Rett Syndrome.

Jill said: “I knew something serious was wrong with Aimee, but I wasn’t expecting to be told she had Rett Syndrome.

“I was expecting that something could be done and that Aimee just needed a little bit of treatment to get her back on track.

“There are currently no treatments for Rett Syndrome and doctors can only try to manage the devastating symptoms of a very cruel disorder.

“However, in 2007 it was proved in a laboratory that Rett symptoms may be fully reversible.

“Rett mice were bred with an on/off switch on the MECP2 gene, the gene that is faulty in Rett. Mice with full blown symptoms of Rett fully recovered when their faulty gene was ‘switched back on’, proving that if protein levels are returned to normal, the symptoms subside.

“Our girls don’t have an ‘on/off switch’ so the research continues. But last year it was announced that gene therapy may be an option for our girls in the future.

“Research costs money and takes time. I just want it to come a bit quicker.”

Rett Syndrome almost always only affects girls and usually shows by the first birthday.

To help raise funds, visit:

For all the latest news you can also follow us on Twitter, like our Facebook page or subscribe to the newspaper or Tablet apps here.




Back to the top of the page