A young cystic fibrosis sufferer has been thrown a lifeline in the form of a new ‘wonder drug’ after receiving the devastating blow that a lung transplant would be too dangerous.
Maisie Barker, 19, from Illingworth, has fought a battle against the condition since she was three months old. The teen says she tries to remain positive even though her days are dominated by pills, intravenous drugs, needles, inhalers, nebulisers and physiotherapy.
Her future seemed to offer nothing but gradually declining health, but a new ‘wonder drug’ Orkambi could be life changing.
She said: “I have been chosen by my doctor to be given Orkambi on compassionate grounds because my health has declined rapidly and I have recently just been denied a lung transplant.
“In 2014 my health declined very quickly and I was hospitalised for more than half the year. Two years later that situation remains the same. I have attended transplant appointments only to be told a lung transplant would be too dangerous for me and that my medical team do not wish to put me on the list. This was devastating news, but you’ve got to carry on.
“I’m hoping that it will improve my lung function, give me more energy and allow me to do more things without getting breathless.”
It is the first drug to treat the cause of cystic fibrosis and is currently being assessed to see if it can be made available on the NHS. However, the National Institute for Health and Care Excellence (NICE) has opted not to recommend the drug to the NHS on cost grounds.
“I feel so lucky to have this opportunity - having cystic fibrosis affects me physically and mentally,” said Maisie.
In February, Maisie posted a split screen photograph of herself online, one side showing all her ‘teenage likes’ on one side and her Cystic Fibrosis necessities on the other, to show people that despite her condition, she is the same as any other girls her age. After the photograph was shared on Facebook, it reached tens of thousands of people.
She said: “That made me realise that I can have a voice and help to make the general public more aware about cystic fibrosis. If that encourages people to help us fundraise to find a cure, then I feel it is important for me to speak out.”
Now the teen is encouraging people to play their part in CF Week (May 9 to 15) by taking part in the ‘Breathe With Me’ Strawfie Challenge.
“All you have to do is try breathing through a straw with a pinched nose for 60 seconds, take a selfie performing this action, a Strawfie, and post it online,” Maisie added. “It’s a good way to engage people about CF as they get to experience what it’s like to breathe if you have CF – if only for 60 seconds - I have to breathe like that every day.”
You then make a donation by texting BWCF64 and the amount to 70070 and nominate friends to take part. Donations go to the Cystic Fibrosis Trust.