A Northumberland woman’s fund-raising bid to help wipe out the disease which threatens to shorten her life has received support from a prince, a duchess and dozens of high-profile businesses.
Diagnosed as a baby with cystic fibrosis and subject to a lung transplant operation at 16, Helen Banks, who was born in Alnwick, is determined to make a difference in the race to find a cure for the genetic disorder.
Cystic fibrosis causes the body to produce thick mucus, which affects the lungs and digestive system in particular.
Only half the people who have it currently live to celebrate their 40th birthday.
Now 31, Helen has set herself the challenge of raising as much money and awareness for cystic fibrosis as she can, despite her daily struggle, akin to taking one breath in every five.
She is holding a charity night – Let’s See off Cystic Fibrosis Fundraising Event – at Linden Hall, Longhorsley, on Friday, July 8, to raise money for research into the condition.
Helen is delighted with the response she has had so far to her requests for auction and raffles prizes.
She sent a letter to Prince Charles, who is patron of the Cystic Fibrosis Trust, and received a response from Clarence House offering a Champagne hamper.
Rob Law, the inventor of the Trunki children’s ride-on hand-luggage, which featured on the television series Dragons’ Den in 2006, and himself a CF sufferer, has donated two signed suitcases.
The Duchess of Northumberland has given Helen three signed books and West End actor Dan Hope, who is also from Alnwick, has sent two tickets to see Wicked, in which he is starring.
A signed cap from American golfer Rickie Fowler, a year’s pass to Beamish museum and Alnwick Castle and a microlight flight over Northumberland with Purple Aviation, based at Eshott, are among the many prizes up for grabs.
Five babies are born with cystic fibrosis every week in the UK.
Helen was diagnosed at the age of six months and every day since has been on numerous different medications, including inhalers and insulin for CF-related diabetes. She also had constant rounds of physiotherapy, which consisted of pummelling her chest area to help cope with the exhausting disease.
“I had to get up, have a nebuliser, wait 20 minutes for it to work, have my physio for half-an-hour, which was five or 10 minutes on each side, front, back and both sides, then have my tablets, get dressed and get sorted to go to school. The whole process would take more than an hour before I could get out the door,” said Helen.
Then it would be repeated at night before she went to bed and often, particularly if she was ill, she would have to endure three sessions a day.
“It was just a way of life, though. I didn’t know any different,” she said.
Having spent a great deal of her life in hospital, at the age of 16, Helen’s condition had deteriorated so much that she was placed on the lung-transplant list.
She was lucky enough to get a transplant, but just two years later her body rejected the lungs, triggered by an appendix operation, and now she only has a 22 per cent lung function.
Helen, who now lives in Cramlington, married in 2011 and works as an admin secretary for Azure Charitable Enterprises.
She said: “A transplant is a wonderful thing. I’m still so grateful every day for the amazing gift that family gave me.
“I most certainly wouldn’t still be here today if it wasn’t for them. A transplant, though, is not the cure.
“The only way to find a cure is through research and research needs money.
“And the money can do something and at least stop it from being a life-limiting condition. This is why I’ve decided to do my bit and raise some much-needed funds for the Cystic Fibrosis Trust.”
The charity night will include the raffle and auction, a slap-up three-course meal, disco and magic.
Tickets cost £35 and anyone interested in more information or to buy tickets, contact Helen by emailing firstname.lastname@example.org
How family life is turned upside down
The effect of cystic fibrosis on Helen’s family life has been incredible.
Apart from her hour-long sessions of physiotherapy up to three times a day before she had her lung transplant, she also has to avoid contact with anyone with an infectious illness, such as a cold or flu.
It has invariably meant that she has missed out on family occasions and gatherings.
“I missed my granny’s 60th birthday party because it was not long after my transplant and my grandad didn’t come to my wedding because he had shingles” said Helen. “If I know that someone has a cold, I will always try to avoid visiting.
“I still go to concerts because I have to live a life. I just have to be careful.”
Helen’s granny Ann Anderson, who lives in Alnwick, said: “I remember when I had bronchitis once, I never saw Helen for months over Christmas and New Year.
“We all did Helen’s physio – it just had to be done. Sometimes people were wondering why you were bashing this child.”
CF sufferers get no free drugs
Despite the cocktail of drugs cystic fibrosis sufferers must take to stay alive, many stil have to pay for NHS prescription charges.
The list of medical conditions for which patients are exempt from charges was introduced in 1968 when the life expectancy for people with CF was not beyond their teenage years. Now sufferers can live to their 50s, but the law has not been changed.
Helen’s granny Ann Anderson said: “It keeps getting mentioned, but it never seems to get sorted and it’s really not fair.”
Helen does get free prescriptions, but only because she also has diabetes, which does qualify.