NEW SUMMER HIT
'Itsy Bitsy Bikini'
Featuring Brian Hyland & Ashleigh Harley
As part of the 22nd August #SaveOur lives Downing Street event
Ashleigh's story
Before and After
After a catastrophic 10-year delay in diagnosing her Ehlers-Danlos Syndrome (EDS) - which left her unable to eat due to severe gastroparesis Ashleigh Harley, was discharged from the hospital to die. Her consultant gave her just six months to live and explicitly told her mum if she wanted change - the option for Ashleigh to be discharged with feeding in place - to use Ashleigh’s death to lobby the PM.
Due to severe complications of re-feeding sydrome from the gut complications of Ehlers Danlos - gastroparesis, she was discharged with a 15% survival rate.
Against all medical odds, Ashleigh survived.
While Ashleigh was in hospital she wrote songs to say goodbye to her family and celebrate the joyous moment of what was left of her life, one of the songs she wrote was a new version of the UK summer classic ‘Itsy Bitsy Bikini’.
Now, after four gruelling years of rehabilitation, and a license from Wise Music/Universal for a new charity version of the hit Ashleigh is taking that doctor's advice—but she using her songs and charity, not her death, to create change through the power of music.
On August 22nd, Ashleigh, joined by Brian Hyland the original singer of 'Itsy Bitsy' and fellow young survivors with chronic, terminal and disabling conditions are launching the national #SaveOurLives march outside Downing Street as part of the last day of filming on the Oscar winning teams film The Dark Horse.
The march will be the launching event of The Dark Horse foundation which is working with the house of commons and a new all parliamentry group to offer a new service ajacent to the NHS to speed up the diagnosis process and improve treatments for those suffering from delayed diagnosis like Ashleigh.
