A second spectacular concert is to be held in memory of a teenage girl from Kirkby who died from a devastating disease that ravaged all her body cells.
The parents of Corah-Beth Slaney are appealing for help in staging the concert, which will raise valuable funds to boost research into the relatively unknown disease.
“It affects more children than cancer, but there is no cure in sight,” said Corah’s mum, Lisa, of Victoria Road.
“Research continues to progress, but the disease is progressing at a faster pace, so funding is a priority, both for the children who are suffering and for their families who need answers for its prevention.”
Corah was a fit and healthy, bright and bubbly schoolgirl until the age of 12 when she developed diabetes and was then diagnosed with epilepsy after suffering from seizures that led to brain surgery.
Then, in December 2014, a biopsy disclosed the news that she had mitochondrial disease, a life-limiting condition that starves the body of energy for vital organs and muscles.
Lisa and dad Carl watched in helpless horror as their daughter, plagued by extreme tiredness and involuntary movements, deteriorated fast. As she was given just months to live, she was unable to care for herself and couldn’t walk, eat or wash without help.
Her plight touched the hearts of the Mansfield and Ashfield community, who rallied round to raise funds to help pay for specialised equipment and modifications to her home.
Music-loving Corah even had an EP made of songs she had previously recorded, and it was sold to raise cash. As her story travelled the country, she met Olly Murs and Jessie J, and she received messages of support from around the world. Sadly, the end came in July 2015 when she died, aged just 17, and tracks from the EP were played at her funeral.
Corah’s parents were overcome with grief, particularly when the date of what would have been her 18th birthday came round on April 28 last year.
“We couldn’t celebrate such a milestone, so we decided to mark it in a different way with an event to raise awareness of the disease,” said Lisa, 45.
The result was a concert, called RaiseTheRoof4Corah, held at the Festival Hall, Kirkby last September, to coincide with Mitochondrial Disease Awareness Week and to reflect Corah’s passion for music.
Thanks to “amazing” backing from family and friends, donations from sponsors and help from volunteers, the event was a huge success, raising more than £7,000 for the Children’s Mitochondrial Disease Network, which is the UK’s only charity dedicated to providing information and support for all mitochondrial disorders.
Now Lisa, a teaching assistant, and Carl, a behaviour support specialist trainer for a healthcare firm, are determined to stage a fundraising event every year, and plan a similar concert on Saturday, September 16.
“Organising a concert gives us something to focus on,” said Lisa. “I feel as if we are doing something positive. But to make it a success, we again need help.
“Corah’s story rapidly became a worldwide phenomenon, attracting some famous faces who willingly gave their support to the cause.
“But since her death, we have been in touch with a family who have already lost two children to this distressing disease and who are now reliving the same nightmare as their 18-year-old son nears the end of his journey.
“More and more families are suffering and in need of support. The charity relies solely on donations and volunteers (it has no paid staff), so we must help raise awareness of this dreadful disease.”
For the concert, Lisa has drawn up a wish-list of help she would like from any interested individuals or businesses. It reads: printing (of tickets and programme), choirs to perform, bands to perform, catering sponsorship, well-known artiste to take part, a PR company to promote the event in the press and on social media, re-tweets to spread the message on Twitter, raffle prizes, auction prizes and an auctioneer.
“If you would like to help in any way at all, please get in touch as soon as possible,” said Lisa, who can be contacted by e-mail at firstname.lastname@example.org or by phone on 07983 963332. The relevant Twitter account is @AChorus4Corah.