Hello, my name is Jayne Jones, and I founded Angel Kirsty’s Wishes in 2019, after losing my beautiful 25-year-old daughter Kirsty Bygraves to Cystic Fibrosis (CF).
In the UK, there are over 10,600 people living with this genetic condition that affects the lungs, digestive system and other organs. We are born with CF and one in 25 of us carries the faulty gene that causes it. Since 2007, all new-born babies in the UK are tested for CF as part of the heel-prick test.
When my daughter Kirsty was born on 11 February 1994, this testing wasn’t available. Right from the beginning, I knew something wasn’t right with her. As a baby, she had breathing problems and she needed to be seen by doctors on numerous occasions. She was often hospitalised, but the doctors struggled to give us a definitive diagnosis. As a young child, Kirsty ate very little and was underweight. The doctors then diagnosed her breathing problems as asthma.
Eventually, when Kirsty was seven years old, she was diagnosed with CF. This was, of course, devastating news for us to receive. We were, however, finally able to move ahead with a treatment plan that included a combination of physiotherapy and drugs, to improve Kirsty’s quality of life.
The early years were difficult for both Kirsty and us. For us, there was so much to learn and manage - the regular hospital visits, the treatments, the twice-daily routine of physiotherapy and the different drugs. For Kirsty, it was frustrating as, just like any other young child, she simply wanted to go outside and play.
When Kirsty reached her early 20s, her lung function further deteriorated. She became unable to walk and needed a wheelchair and oxygen. Her hospital admissions increased year on year and, later on, her treatment was adjusted to include more palliative care.
She was regularly admitted to the wonderful St Christopher’s Hospice for respite and recuperation. The care she received there was incredible, and the staff were so welcoming. There was so much for Kirsty to do at St Christopher’s, and she particularly enjoyed art. On the days that she was too unwell to travel there, the staff even arranged for an art teacher to visit her at our home.
To show our appreciation of St Christopher’s and the Cystic Fibrosis Trust, Kirsty and her family and friends raised awareness and funds by organising sponsored 10k runs and charity balls. What fun we had! One year, Kirsty was asked by the organisers of the Petts Wood 10k to fire the starter’s gun, which she loved.
Although Kirsty was struggling with her health, she remained maddeningly head-strong and wanted to live her life to the full. When we asked her what else she would like to achieve in her life, she said she wanted to meet as many celebrities as she could. So, that was our next job - and we had our work cut out!
‘Team Kirsty’, as we named ourselves, spent hours upon hours writing, emailing and telephoning celebrities to ask if they would grant Kirsty’s wish to meet them or maybe video call her. The response was truly phenomenal. Kirsty got to meet and talk to so many people, and the experience gave her immense pleasure. No sooner had she enjoyed meeting one celebrity, she was badgering us to know who was next! Her constant excitement exhausted both us and Kirsty – but, essentially, it gave her the strength and determination to carry on living.
As Kirsty’s family, we give our hugest thanks to everyone who found a place in their hearts to fulfil her wishes, including Chelsea Football Club, Bucket List Wishes, who arranged for Kirsty to meet Simon Cowell at The X Factor, James Martin, Bradley Walsh, Peter Andre, Frank Bruno, Eamon Holmes and Ruth Langsford, Alison Hammond for speaking to Kirsty on Facetime the day before she died, the late Tom Parker and his lovely wife Kelsey Parker, whose personal visit to Kirsty at home was a really special surprise visit and reported in a local news article. Our special thanks go to Emma Willis, who kindly invited Kirsty to the set of The Voice where she met Tom Jones, Jennifer Hudson, will.i.am and Olly Murs. This particular visit was a dream come true for Kirsty, and we will never forget how happy it made her.
My goodness, how much we miss her now, and what a big space she has left in our lives. Her love and laughter inspired us all. As her mum, some days are tougher for me than others, and I never know what each day will bring. What I do know, however, is that Kirsty would be overjoyed that we are continuing her valuable work by endeavouring to grant wishes in her memory, through Angel Kirsty’s Wishes, to vulnerable young people and their families - especially those with CF who, as we know from our own experience, are so deserving of some happiness.
I am also fortunate to work for a remarkable organisation named Genomics England, which is funded by the Department of Health and Social Care. Genomics England aims to create a world where everyone benefits from genomic healthcare, supporting the NHS to deliver a world-first whole genome sequencing service for patients with rare conditions and some cancers, and connecting research with healthcare to enable advances for the future.
We can all play a part in complementing this excellent and positive work by continuing to raise awareness and funds, so that people living with CF can look forward to longer and healthier lives.
If you would like to join Team Kirsty, please make a donation to Angel Kirsty’s Wishes.
On Kirsty’s behalf, we thank you.
Jayne Jones, Founder, Angel Kirsty’s Wishes
We can all play a part in complementing this excellent and positive work by continuing to work together to increase awareness of young people living with life-limiting illnesses, especially those with cystic fibrosis, who can still fulfil their dreams and aspirations even under challenging circumstances.
Jayne Jones
Founder of Angel Kirsty’s Wishes
