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When singer Charlotte Howard was diagnosed with a heart condition after 18 months of horrific symptoms she and her friends starting planning an event to highlight the plight of those living with hidden illnesses.
Called I'm a Survivor, the fundraiser at Ramsgate Football Club would be a musical extravaganza, aimed at raising awareness and money for two charities.
But in a cruel and heartbreaking twist of fate, while planning the event Charlotte's mother Claire, 44, died suddenly and unexpectedly at home from heart failure, caused by a hidden illness which had lay undetected.
Only now has it emerged that Charlotte's condition could be hereditary and linked to her beloved mum.
Close friend Ben Wallis, who is organising I'm a Survivor alongside Charlotte, says the tragedy has spurred them on even more to make the concert extra special.
The musical event on Saturday, November 16, featuring singers who performed on X Factor, will now be held in memory of Claire.
Mr Wallis, from Ramgate, who has cerebral palsy, says the night before she died, the mum-of-four had been laughing and joking with her daughter Charlotte, known on stage as Charley Monroe and who has performed at London Pride in front of 30,000 people.
"That's the hardest thing to understand," he said.
"How can she go to bed, then not wake up again?
"It puts it in perspective - with all the modern technology and things that can be done, why are people still going undiagnosed with illnesses?"
The 29-year-old, who worked closely with Claire in the music industry, says the idea for the event was initially borne out of what Charlotte was going through medically and another pal, who has intestinal failure.
"My wife Holly also had a lot of medical treatment when she was a young baby and Great Ormond Street saved her life," he said.
"A lot of that was hidden illnesses that you don't see on a daily basis.
"This is what started it really."
Mr Wallis, who works at an insurance firm but is involved in music and hosting charity events, says the concert holds more meaning now.
"Claire loved the music industry and it's only right we give her a musical event she would have been proud of," he said.
"She was my music mentor and so I’m really missing her guidance but feel that it’s a must out of respect for such an incredible lady."
Claire, who lived in Kennington, was a health care assistant but also managed Charlotte, a winner of Pride's Got Talent.
She also made it through to bootcamp on The X Factor in 2012.
The 23-year-old Canterbury Christ Church student said: "My mum was my biggest supporter and I'm doing this in her memory.
"I just want to thank everyone that has been there to support me and my family at this time.
"It is so important to raise awareness about hidden illnesses because they are so misunderstood and overlooked, but they are cruel and they affect real people and real families every day."
Money raised through the event will go to GIFT (Gastroparesis and Intestinal Failure Trust) and Great Ormond Street Hospital and towards a memorial bench.
For tickets to I'm a Survivor call Mr Wallis on 07943 012299 or email lamusicprod@gmail.com
To donate visit https://bit.ly/2m1rpXg