It’s the 50th anniversary of an organisation that has helped to carve out a better future for any baby born with Cystic Fibrosis.
But there will be no bunting or Champagne-popping – officially at least.
That is because the big celebration will only come when a cure is found for Cystic Fibrosis (CF), an inherited condition that affects around one in every 2,500 babies and causes the body to produce a thick mucus that causes problems with the lungs and digestive system.
Despite no major jubilations, it’s hard to imagine how desperate the situation would be but for the forward-thinking people who formed the Cystic Fibrosis Research Foundation Trust 50 years ago.
Now called the Cystic Fibrosis Trust, it has helped to massively increase life expectancy, identified the gene that causes the illness, and ensure that children are diagnosed at birth through a simple heel prick.
The Portsmouth branch of the trust was set up in the 1960s by parents and a distinguished Portsmouth pharmacist Dick Tremlett.
Since then the trust has provided a vital network of support, advice and a listening ear for scores of local families dealing with CF.
I meet three mums who have been part of the trust for several decades between them.
Sue Kruk, 70, an artist from Hayling, has been part of the trust for 44 years and is currently the secretary.
‘In those days the situation was absolutely dire,’ says Sue.
‘Most children died in early infancy.
‘So they set up the trust and within a year, research had started and branches were being set up.
‘The trust was one of the first charities that decided to look into genetics in the early 1980s.
‘It’s a new era in medicine and we played a part in that.
‘There’s been enormous advances in treatment, there’s diagnosis at birth now, and life expectancy has gone up from one or two years. People born today will definitely reach 40.’
Every month families who are part of the local branch meet in an informal setting in a member’s home.
Talking and sharing experiences is the main goal.
‘It’s always important to have a support group especially if you have a child who is ill,’ says Mary Short, a 53-year-old businesswoman from Horndean, whose son Dan, now 21, has CF.
‘The greatest thing is to have somebody who understands it because they’ve been there, too.
‘The thing that joins us is we are part of that CF family.’
Mary tells me how she completed the London Marathon earlier this month.
‘There were quite a number of people with CF doing the marathon,’ she adds.
‘I found it hard. How have they managed to do the training and then be able to run it?
‘It’s totally inspirational. That’s what people can do and a lot of it is because of the work the trust has done.
‘Positivity is what really helps.’
Sue explains that the CF parents can often feel ‘lonely and isolated’ and the trust has always been something they could turn to for support.
‘It’s completely traumatic when you first find out about it – I don’t think that has changed in 40 years,’ says Sue, 70, whose two sons were born with CF and one, Ziggy, sadly died in 2001.
‘People deal with it in different ways.
‘You look at these people with CF and they look perfectly alright – and they may have three or four hours of treatment every day for life.’
One of the key messages of the trust is ‘you are not alone’.
Sarah Knowles, 59, from Hayling, who has a 33-year-old son with CF and had been a member for more than 30 years, says: ‘I think people need to know it’s not all doom and gloom as they might think initially and that children are surviving longer now.
‘The trust helped me such a lot when my son was born.
‘It’s so nice to have people in the same situation.
‘It’s just a shame that 50 years on it’s still going, but it is doing a good job.’
The trio are vehement in their disapproval when they see CF described as a ‘killer disease’ in the media.
A cure is the end goal for the trust and Sue, Mary and Sarah hope it will be in their lifetime.
Mary says: ‘You have to believe it will be.
‘A cure would mean everything.’
The results of trials into gene therapy come out this year and a new drug called Kalydeco in the US is showing remarkable promise.
Sue adds: ‘There’s even someone who feels so well on it that he’s going to climb Everest in May.
‘It’s not the end of the hope by any means, but there’s real hope in several directions.’
Despite all the heartache that CF causes, it’s clear that through all the pain emerges a deep yearning for living and enjoying the moment.
Sue explains: ‘All of us know too many children who haven’t made it and we don’t forget them.
‘On the other hand, living with CF every day, I think, is a joy.
‘You learn to live one day at a time. All the simple pleasures of life and all the parties and birthday parties we have.
‘I think there’s also a lot to celebrate. Some people with CF achieve amazing things.’
FAMILIES associated with the trust range in age from nought to 86.
The oldest supporter is 86-year-old Joan Finigan, from Fareham, who has been campaigning for 50 years.
Members wanted to give special mention to Joan Allday, from Sarisbury Green, who has a stalwart of the branch since 1969 and organises the Christmas fayre every year.
Thanks to St Faith’s Church in Havant, the trust ran a fundraising shop every February for 19 years.
Vital research into CF is currently under way in the heart of the city at Portsmouth University, led by Professor Jan Shute and her colleagues. Their work has been funded in the past by the trust
Supporters recently enjoyed a tour of pharmacology department.
The next big event for the trust will be a vintage tea party at the Tithe Barn, at Ditcham, near Petersfield.
It takes place on Sunday, June 22 from 2pm to 5pm and there will be food, vintage cars, auction, stalls, raffle, glitter tattoos and music.
Tickets are £12 in advance or £15 on the door.
Call 01489 601920 or e-mail firstname.lastname@example.org.
For more information visit facebook.com/CFPortsmouth.
IVY Weir was one of a new generation of newborn babies to be diagnosed with CF by a routine heel prick – a procedure that the trust campaigned for until it was finally adopted in 2007.
Catching the condition early enough gives people the best chance of a healthier life.
Ivy’s mum Gemma Daysh, 30, from Copnor, says: ‘It was a huge and devastating shock as CF has never shown itself among our families.
‘When she was born she drastically lost weight even though she was consuming huge quantities of milk, we were unaware at this stage that her body was just simply not absorbing anything she was taking.’
Gemma and her partner Mat Weir admit their ‘world fell apart’, but say that an amazing team of doctors and nurses at Queen Alexandra Hospital in Cosham have helped them to deal with CF head on.
Gemma says: ‘Since Ivy’s diagnosis we have become aware of the CF trust and have found their support, knowledge and information a massive source of comfort.
‘Because CF is quite rare not many understand. The work they are doing is amazing and it is their efforts that have helped to get scientists that little bit closer to finding a cure.’
KIM Hills is one of the success stories in modern medicine’s treatment of CF.
With little hope of a future, she underwent a double lung transplant five years ago and it has transformed her life.
She has now married to Stephen and lives in Gosport.
At Christmas she started working at Next in Fareham.
‘It’s back to normal now,’ she says.
‘I am working, have a house – it’s all exciting.
‘To me the transplant was the only option to get my life back.
‘I was 21 when I went on the list. I wanted to live my life. I was literally housebound and it was exhausting 24/7.
‘I had to have physiotherapy every day and antibiotics just to keep me going.’
The six-hour procedure was done at Harefield Hospital, near London, and Kim spent six weeks in hospital.
Since then she has never looked back and is very grateful to the support she received from the trust.
‘They are really supportive and help with anything that you want,’ she says.
Her mum Sally Dale says: ‘Everyone has their “down” days, but the people in our local group give words of encouragement and are understanding of how hard it can be to be a CF parent trying to stay positive every day. I can still remember the first meeting I went to. I came out of that meeting feeling so positive about dealing with CF and knowing I was not alone. A cure will be found for CF, but until then the work of local groups and the CF Trust goes on.’