There is no known cure for this disease and the only treatments available are to try to control the symptoms and relieve the pain. The disease process affects people differently, however; in Corah’s case, her rapid deterioration over six months is clearly visible.
On 24th January, #AChorus4Corah was launched; an appeal to bring some lovely surprises to Corah to make her smile. One of the aims was to find a popstar to sing with Corah. Her favourite singer is Jessie J and thanks to the support of Corah’s many followers, who took to social media in their droves, six days later Corah met Jessie.
The appeal continued, with a request for people to upload songs and videos to the Chorus4Corah Facebook page. A JustGiving page was set up, to raise money for The Lily Foundation, a charity which supports families affected by this terrible disease.
Corah’s deterioration means that she is now unable to do anything for herself and simple tasks like personal hygiene involve a two-hour round trip to the hospital, which is taking energy from Corah that she simply isn’t able to give. Her parents recently applied for a Disabled Facilities Grant, for a wet-room at home and despite being told they were entitled to the grant, Corah was put at the bottom of a 2-year waiting list.
Corah’s supporters protested through every means possible; even the local press took up the story and within a week Corah had been moved to the top of the waiting list, but unfortunately no funding will be available until April and, even then, the work is likely to exceed the maximum grants available. So a ‘TagAMate & Donate’ challenge was launched to raise funds for the shortfall.
#SingASongForCorah is spreading across social medial channels with people joining the chorus by singing songs and donating to www.gofundme.com/SingASong4Corah The family have pledged that any surplus funds will be donated to The Lily Foundation. In less than two weeks, over £7000 has been raised!
In the meantime, this lovely teenager continues to smile and sing. Her voice might not be what it once was but she’s not prepared to give up. Corah’s muscles are constantly tensing, causing her body to pulsate and jerk 24/7, which can only be compared to an unrelenting physical work-out and which causes her intense pain, despite her being on strong medication. Despite this, she still sings for her supporters, with her video clips being uploaded to Facebook and watched by thousands of people.
Corah’s supporters know only too well that getting a wetroom for her is a race against time. Consultants are unable to predict whether Corah’s health will continue its rapid deterioration, but have stated that her life-expectancy could be weeks or months, hence the growing number of people who are joining the chorus and singing their hearts out for Corah.
As Leo Tolstoy once said “Music is the shorthand of emotion”, and on hearing Corah’s story, one can’t help but feel emotional. #AChorus4Corah may turn out to be the biggest collective voice that the UK has heard for many years, but will it grow quickly enough to provide Corah with her much-needed wetroom?