Daily agony to stay alive
THE parents of a little girl with cystic fibrosis have revealed their daily battle to keep her healthy as they wait for life-saving drug Orkambi.
Starting at 6.30am, Charlotte Taylor, three, has a relentless routine of pills, therapies, physiotherapy and diet-specific meals – and she is deemed one of the UK’s healthier CF youngsters.
Currently, the NHS cannot afford Orkambi’s list price of £105,000 per patient a year charged by US manufacturer Vertex and a £500million offer for the firm’s portfolio of CF drugs was rebuffed.
Families of some of Britain’s 10,000 CF sufferers are urging Vertex and UK health chiefs to end the stalemate and the Daily Express is crusading for Orkambi to be made available.
Our online petition has attracted more than 62,000 signatures.
In the three years Orkambi has been unavailable on the NHS, it is feared up to 220 adults and young children have died needlessly.
But thanks to our hard-hitting campaign, both sides have agreed to try to reach a funding agreement.
Exhausting
Charlotte, of Cobham, Surrey, takes an average of 14 pancreatic enzyme tablets a day: Two at breakfast; one with her snack; five at lunch; one with an afternoon snack; four with her dinner and one with her evening milk.
But her food must be eaten within 15-20 minutes of taking the pills and fussy eater Charlotte’s mother, Mary, faces a daily battle to get her to eat meals in time.
But Mrs Taylor, 38, said: “Believe it or not, we are the lucky ones.
“Charlotte is actually quite healthy at the moment, so a poorly CF child her age would have a lot more treatments packed in.
“It is exhausting for child and parents.”
Even Charlotte’s five year-old sister Allie gets involved, trying to encourage her to eat her meals and sitting with her during physiotherapy.
On top of all her pills and supplements, she has half an hour of gruelling “bubble-pep” physio to clear mucus from her lungs, along with 15 minutes of back-slapping “percussion” treatment given by her mother.
She goes to bed exhausted at 6.30pm, leaving Mrs Taylor and husband Simon, 40, to begin preparing her next day’s meals and medication.
Mrs Taylor said: “There are routines and rules and you have to stick to them, or else your child will get ill very quickly – it is that scary.
“All CF families live our lives on a daily knife-edge and it is terrifying.”
Mrs Taylor said of the Orkambi wait: “We need action to be taken now so this life-limiting condition becomes life unlimiting.”
In August, family friend Amanda Sharples is taking part in an English Channel relay swim for the Cystic Fibrosis Trust.
Anyone who would like to help can go to www.justgiving.com/fundraising/channelswimforcharlotte