A CHARITY ball to celebrate what would have been a cystic fibrosis sufferer’s 18th birthday has raised over £8,000 in her memory – to help other sick children.
In 2018 brave 11 year-old Elle Morris – for years a key figure in the fight for NHS lifesaving CF drugs – died in her mother’s arms after a double lung transplant failed to stop her deteriorating health.
But despite her illness she charmed stars like Simon Cowell, Hollywood‘s Chris Pratt, Dermot O’Leary, Rita Ora and Olly Murs to all raise awareness of the cruel genetic condition.
On 29th January Elle would have turned 18, so to celebrate her remarkable life mum Becky Whitfield hosted ‘ElleWood’ at Peckforton Castle in Cheshire, to fundraise for the CF Trust and Great Ormond Street Hospital.
The Daily Express joined over 150 guests at a glitzy ball where a video of Elle aged 10 singing ‘Fight Song’ by US singer Rachel Platten was played, with the superstar also appearing with Elle in a clip.
Mum Becky Whitfield at ball with campaigning mothers of other CF sufferers
Afterwards mum-of-two Becky, 37, hailed the ball a success for not only fundraising so far over £8,000 – but also to remember all Elle’s incredible achievements in her short life.
Becky explained: “It is an incredible feeling knowing that so many people wanted to come along and remember Elle, her strength and her achievements. We were so touched and proud.
“I said a few words but when we played an old video of Elle singing ‘Fight Song’ there was not a dry eye in the house.
“It was tough also as we were relieving everything, the wonderful times with Elle and the hard times when she was ill or poorly and worse.
“But each day the grief is less and the importance is more about creating a proper legacy in her memory.”
Poster for ElleWood, the Elle Morris 18th birthday ball
Elle Grace Morris lived a tragically short but remarkable life getting stars to raise awareness of CF like Simon Cowell, Hollywood‘s Chris Pratt and Dermot O’Leary.
Yet despite being often very poorly, she launched her Elle’s Wishes campaign in 2016, meeting stars like magician Dynamo, Lorraine Kelly, Olly Murs and Rita Ora, making a music video and promoting organ donation.
In February 2017, after seven months waiting in vain for access to Orkambi, poorly Elle had a double lung transplant but after a series of infections, in January 2018 her family revealed she had died in Becky’s arms.
But on Friday February 2nd Becky, her daughter Cara, 17, fiance Jonny Walker, 29, and Elle’s dad Ian Morris hosted the charity fundraiser to mark what would have been the weekend of Elle’s 18th birthday.
It took place at Peckforton Castle near Nantwich which had also been the venue for Elle’s 10th ‘Princess-themed’ birthday party.
Mum Becky on the beach with daughter Elle
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CF is caused by a faulty gene which controls the movement of salt and water in and out of your cells, meaning sticky mucus clogs up your lungs and bowels making hard to breathe and digest food.
For years we fought for UK patients to access Vertex’s miracle tablets and in the summer of 2020 families celebrated when the then Health Secretary Matt Hancock agreeing an NHS deal for wonder drug Kaftrio.
But last autumn NICE dropped their bombshell draft guidance saying despite the three treatments – Orkambi, Symkevi and Kaftrio – being hugely effective, their ‘list price’ was too high.
NHSE confirm that regardless of the National Institute for Health and Care Excellence’s (NICE) decision, any CF patient already currently taking Orkambi or Symkevi can move on to Kaftrio when aged two – the minimum age you must be to take the wonder drug.
There are currently around 8,000 UK sufferers on Vertex’s drugs and they will not have them withdrawn regardless of NICE’s final decision – while around 1,000 patients have such rare CF mutations no existing drug works for them.
That leaves around 2,000 toddlers and babies either too young to yet start on wonder pill Kaftrio, or awaiting approval to start, who currently remain in limbo.
Guests at the ball included parents of CF sufferers and Daily Express reporter Chris Riches
A fortnight ago NICE announced they are “pausing publication of final draft guidance” to allow for further discussions between NHSE and Vertex over the pricing of the life-saving drugs to see if a long-term, inclusive deal can be struck.
Meanwhile Becky urged policymakers to sit down and strike a deal so that no-one ever misses out on CF drugs in the UK again.
Becky told the Daily Express: “When I heard that new generations of CF patients could be denied these proven, life-saving treatments I was absolutely appalled.
“Not only is it frankly cruel to deny little toddlers drugs that older children and adults are already taking but it could create a two-tier health service – those on lifesaving pills and those being denied them.”
Readers can still make a much-needed charity donation to GOSH and the CF Trust by visiting https://elleswishes.co.uk/