The parents of tragic Kirkby teenager Corah Slaney who died from a terminal disease aged just 17 are holding a fundraising concert to mark what would have been her 19th birthday.
A whole community has come together to back the second Raisetheroof4corah concert at Kirkby Festival Hall on September 16.
The concert will take place during Mitochondrial Awareness Week as well as raising money for the Children’s Mitochondrial Disease Network.
Corah’s mum Lisa, 46 said: “Corah had Mitochondrial disease and as she battled with it we found out there was no specific support network for sufferers and their families.”
Supported by her husband Carl she comforted her daughter through her final months, trying to make her life as normal as possible.
Lisa helped attract a huge following on Facebook called #AChorus4Corah where people would post video clips singing, encouraging Corah to sing messages back.
Lisa was supported by her husband Carl in caring for Corah until she died in 2015. Last year she was awarded carer of the year in the Chad Pride awards.
She added; “We went online and found the Children’s Mitochondrial Disease Network. “We discovered that he founder Paul Preston was on the verge of losing his third child to it.
“He lost one child aged eight weeks and his daughter Stacy at the age of 20 on the same month we lost Corah.
“While they were still grieving their son Keiran died in March this year.
“There is no treatment it is about raising awareness.
“The network needs to be there to help other families and to pay for more research.
“Hopefully if we raise enough money for the network, in future people can find out about the disease. Everyone has heard of cancer, but this kills more children than cancer each year.
“It took a long time to diagnose Corah. We want to get more literature out there which could help people reach a diagnosis earlier.”
Mitochondrial disease made headlines around the world earlier this year when Charlie Gard, the baby whose fate was the subject of a protracted court battle, died from the condition aged just 11 months.
Lisa said: “Charlie had it and his parents had a huge battle on their hands. It usually affects very young babies.
“Corah didn’t show any signs until she was 13 and she didn’t get diagnosed until seven months before we lost her.”
Last year’s concert raised £7,000 and a fundraiser by the Barrel and Bean pub in Kirkby raised a further £2,000.
Lisa added“We have had tremendous support with our raffle this year and Team Corah have been brilliant.
Carl has just lost his father and we get comfort from doing this. If we can help someone else, Corah’s death will not have been for nothing.”
Raise the roof 4 Corah 2017 is being held at Kirkby Festival Hall on Saturday September 16 at 6.30pm.
Among the acts will be singers Katie Trinder, Ionica Adriana, Bob Reed, Lee McKenszie and Rosina Reed.
Holly Hill School and Greenwood primary School choirs will perform.
There will be a treat for the ladies when Corah’s dad and four other cheeky chaps take to the stage with a new ‘Corah’s Chippendales’ wection.
The Rockettes will perform a routine of Burlesque dancing.
Plastek is sponsoring the food which will be catered for by Jaspers.
Colin’s Earthworks have sponsored the first and second raffle prizes this year, with an Apple Ipad up for grabs as first prize.
There is a Facebook RaiseTheRoof4Corah selling page where people can buy raffle tickets and sell unwanted items to go towards the total raised.
Tickets for the concert including food are £12 adult and £6 for children. are available from the Festival Hall, the Barrel and Bean in Kirkby, Greenwood Primary School, or email Lisa at firstname.lastname@example.org