“I hope that Jenny continues to heal and has improved health with new developments.”: Dad Ivan shares Jenny’s story
CF diagnosis
Jenny was born on 25 January 1999. Her birth was the result of a treatment called pre-implantation genetic diagnosis at the Hammersmith Hospital, London. It is a technique that involves testing cells from embryos created outside the body by IVF for a genetic disorder. These tests were carried out for the specific disorder that the embryos are known to be at significant risk of inheriting; in our case, this was CF, as our older son Alex has CF.
Unfortunately, at 11 weeks, a CVS, (chorionic villus sampling), which is a test carried out during pregnancy to check if your baby has a genetic or chromosomal condition, was performed on my wife, Sally, and Jenny was found to have cystic fibrosis. All the signs had previously pointed toward her being unaffected. Our doctor could not explain how her CF had been missed and how the mistake had been made.
But from the moment Jenny was born, we knew she was special!
Growing up and finding her voice
Jenny had a reasonably normal childhood guided by us and her big brother, Alex, who supported her through their mutual understanding of what it is like to live with CF. Jenny did, however, miss a lot of school because of illness. This accelerated as she continued through secondary school. As with her brother, Jenny was often in hospital on intravenous antibiotics and was put on a feeding tube during the night to help her maintain her weight.
In spite of all her medications and treatments, Jenny was determined to live life to the full, and from the age of seven, she joined the Christchurch Priory Girls' Choir and later auditioned for and joined the National Youth Choir of Great Britain.
From the age of 11 until 16, she performed with the choir all over the Country, including Oxford, Harrogate, Coventry and London, at the Royal Albert Hall. During this period, she sang each year at the Bournemouth Music Festival, achieving many awards. In 2012, she was runner-up in the Bournemouth TalentCall Competition, where she sang ‘Nella Fantasia’.
She also sang at the Henfest CF Fundraising events in Wimborne in support of her good friend Kate Hennessey. In addition, she sang at our East Dorset CF Fundraising events at the Thomas Tripp and Soho in Christchurch.
Facing challenges
Singing was Jenny’s life, but it was affected by her poor lung function and the contraction of Mycobacterium abscessus when she was 17, which led to her being put on eradication treatments for over six months.
Unfortunately, this resulted in her immune system crashing and her being inflicted with peripheral neuropathy, a type of nerve damage that can cause pain, numbness or weakness, which meant she had to use a wheelchair for almost a year. Other side effects included the loss of her voice, as she was too poorly to continue singing, and the loss of hearing.
Although she tried her hardest to remain on the drugs, her health deteriorated so much that she had to stop the treatment without successfully eradicating the Mycobacterium abscessus infection. In their review, the consultants expressed admiration for Jenny’s perseverance in staying on such high-strength drugs for so long.
‘Zero Time’(LOSING VOICE & ERADICATION)
This painting represents a photo that my mum took of me asleep on the sofa at my aunt and uncle’s, celebrating my 18th birthday. I was often sleeping whilst having my eradication treatment with their dog Zero snuggled up next to me. Zero Time also translates how my activities of daily living were limited and I felt outnumbered by my own body.
‘deriapmI’ Story. (DEAFNESS & ERADICATION TREATMENT)
This painting is called deriapmI, which means impaired backwards. This represents the confusion when I can’t hear properly and therefore don’t always catch or understand what people are saying.
Turning to a new form of art
At this point, Jenny began to express herself in a new way. She had always been a talented artist, but now she used this talent as a channel for her frustration and pain.
During her hospital stays, Jenny worked on paintings for an exhibition, which was realised in October 2016 at the Atelier Gallery, Christchurch.
A film, My Constant War within My Body, features Jenny explaining the meaning behind her work. She was 17 at the time.
Talking about her work in the film, Jenny said: "My artwork is inspired by life with terminal illness through my eyes and not from the perception of the 'outside' world.
“My art represents the struggles that my body presents with me but providing me with the mindset to overcome the extreme of the impossible. Importantly illustrating the golden streaks through life as every breath is precious.
“Life is the happiness, laughter and incentives that I'm lucky enough to experience as opposed to the monsters or suffering and moments of pain, visible or not.”
In April 2018, Jenny held another exhibition of her work at the Hatch Gallery in Christchurch. During this period, Jenny was extremely ill and regularly in and out of hospital.
Her aim with this exhibition was to show the world what it was like to live with cystic fibrosis and to raise funds for her lifelong dream of travelling around India. And by October 2018, they had raised enough money and Jenny and her friend Jess set off for a two-week trip to India. It was an amazing achievement and an experience we never dreamed she would manage to fulfil!
Jenny has always pushed herself in spite of the trials and tribulations of dealing with CF, poor lung function and chronic fatigue.
And last year, in September 2022, she married her fiancé, Paolo — something she never thought would happen. Together, they now navigate the torrents and rapids of CF.
The impact CF has on daily life
CF and chronic fatigue affect Jenny both physically and mentally. The illness often makes her feel like a failure because she can't always do what her healthy peers can do, and the opportunities for future growth are limited because she does not have the energy or capacity to maintain a full-time job. Due to her fatigue, she often has to rest and sleep in the afternoon.
She struggles with the trauma side of the illness and has PTSD from bad health experiences in the past and subsequently has regular counselling. As with all people with CF, she has an extensive range of treatments. But as treatments have improved, Jenny has had to adapt to the idea of reaching an older age than was previously the case. This has brought its own set of problems!
Starting Kaftrio
Jenny began taking Kaftrio in January 2021 after it became available in August 2020. At first, Jenny found that it didn't make things better.
However, since taking Kaftrio, her lung function has gradually improved, and her quality of voice has returned. Her lungs have been less unpredictable, and the amount of physiotherapy she has needed to do has been reduced.
‘That Wooden Feeling.’ (LUNGS & BREATHING)
This piece represents the distortion of the ‘absence of breath’ and the lack of control of sporadic weight loss caused by infection growing throughout the lungs. I have shown through my posture the strain for breath, I enhanced my ribs to show the importance of my lungs beneath struggling. I painted my spine and joint bones protruding from constant weight battles with pancreas inefficiency to maintain ‘fuel’ to fight back at infection.
‘Don’t Cross.’ – (Cross Infection)
This painting is particularly close to my family’s heart, as it’s an issue that affects my whole family, our environment and mine and my brother’s safety; not from the world but from each other. This piece also explains the isolation and distance between other Cystic Fibrosis patients. As we aren’t allowed to make physical contact because of cross infection, so our main way of communication is through social media.
Support from the Trust and fundraising
The Trust has supported Jenny's brother, Alex, over the years but Jenny has yet to request any help to date.
Both Jenny and Alex try not to think about their CF as it can become all-consuming. Unfortunately, every day is a reminder. I think we do the reading and worrying for them.
I am the Chairperson of the East Dorset Branch of the Trust and have been for over ten years now. Sally has been involved since 1995, when Alex was two. We fundraise for the Trust and normally try to have one main event each year. Our last one was in November 2022, and we are looking to stage another this year. In most cases, we have raised over £6,000 each time.
Over the years, we have raised funds to provide equipment for both Poole and Southampton hospitals. We also try to act as a source of support for local CF families.
Hopes for the future
I hope that Jenny continues to heal and hopefully has improved health with new developments. Unfortunately, both Alex and Jenny also suffer from chronic fatigue and PTSD, so life isn't easy for them. Both of them have picked up various infections this year, which have adversely affected their fitness. Kaftrio has made a difference, but much of the damage to their lungs has already been done.
As both Jenny and Alex have often remarked, they just want to be normal and live a normal life, get a full-time job, get a partner, and buy a flat or house. Things we all take for granted. Hopefully, new treatments will enable newborns today to live a more normal life.
We also need to remember that Kaftrio hasn't miraculously eradicated CF. It has helped, but people with CF still have bodies that have been hit by bacterial and viral tsunamis over a number of years... the damage has been done.
When I asked Jenny what her own hopes are she told me: "To continue to process and grow from my current situation and make the best possible life for myself and my husband while producing art to help others and sing for my soul. To enjoy life with my family and friends, create lots of happy memories, and go on lots more adventures."
For people with cystic fibrosis, cross-infection can be very harmful and poses a particular threat. This is why people with cystic fibrosis should not meet face to face.
Read our cross-infection policy
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Cystic fibrosis (CF) is a genetic condition which causes sticky mucus to build up in the lungs and digestive system. It affects around 11,000 people in the UK. One in 25 of us carries the faulty gene that causes it, usually without knowing.
Since 1964, we've supported people with cystic fibrosis to live longer, healthier lives - and we won’t stop until everyone can live without limits imposed by CF.
If you’re struggling with any aspect of cystic fibrosis, we’re here to help. Contact our Helpline for support, a listening ear or just someone to talk to.
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