By Tom Valenta
It is twelve years since Abbie Fennessy passed away at the age of twenty-three. Her name lives on through the Abbie Fennessy Trust, a fund launched by her family and two close friends in conjunction with Cystic Fibrosis Community Care (CFCC).
Born in Melbourne in June 1988, the third child to Beth and Gerard Fennessy, Abbie was diagnosed with cystic fibrosis at eighteen months. The compulsory heel-prick blood test was only introduced in Victoria in 1989, four years after some other states.
As Beth, a secondary school and TAFE teacher recalled: “Our beautiful and cherished younger daughter, Abbie passed away after spending five days in the ICU at the Alfred Hospital. Always the gentle, intuitive and friendly individual, her intellect and sense of humour was always entertaining all those around her. She was the first known CF sufferer across both sides of our family so diagnosis came as a total and devastating shock.”
“We quickly made it our responsibility to learn about CF, I even based my honours thesis on, ‘Parenting adolescents living with CF.’ Abbie remained as active as possible by swimming, attending gym sessions and playing netball until young adulthood when a FEV under 28 per cent and haemoptysis made it impossible to continue.”
Abbie was often in hospital and most stays, even her tune-ups required at least five weeks of intensive effort. Parents Beth and Gerard tag-teamed her care as Beth was able to be with her at nights and Gerard, a firefighter, covered most days. They took her home for the family evening meal most nights. Abbie’s older siblings, Jaren and Sarah also did their best to look after their little sister.
When hospital in the home commenced, she was able to enjoy home care with her family and pets and after-school visits from her close friends. Abbie worked with international supplier of medical technology products, Technipro-PulmoMed (now Mediplast) from late 2010, while in her last year at university. In 2012, she graduated posthumously in Health Promotion/Bio-Med.
The grieving Fennessy family established the Abbie Fennessy Trust (AFT) soon after her passing. The founders were Beth, her older daughter Sarah, Abbie’s best friend Clancy and Clancy’s mother Roz. The AFT’s mission is to support young adults with CF and its four founders today remain its drivers.
“After meeting with CFCC, we identified a demographic that needed extra support and acknowledgement – young adults,” said Beth. “We have a few hundred supporters and thanks to their tireless support over the years, we now solely fund the physio-massage program at Monash Medical Centre for young adult inpatients with CF. We hope with growth in our supporter numbers that we can soon offer this service to children with CF as inpatients,” said Beth.
“Our fundraisers have included a cycling relay, movie nights, a trivia night, dinner dance, fashion purchases and a boutique brewery event.”
In 2022 Beth initiated the “Stitch-up CF” challenge in which patchwork businesses hold hand-stitching workshops and participants stitch a quilt block from prepared kits and then their quilting friends help make these into quilts for recently bereaved CF families/partners. In 2023, the AFT encouraged younger and those “new” (or “non-stitchers”) to attend a workshop and learn these life skills. “It’s also a meditative way to spend a few hours together, meet new friends and every cent raised from purchasing a kit and joining in, goes towards the Monash Massage program. I’m hoping these workshops will continue to be popular and grow in number so we can provide more quilts to CFCC to gift,” said Beth.
On the confronting issue of grief, Beth said: “My journey with bereavement continues. I don’t believe ‘time heals.’ However, I’ve noticed the depth of such intense loss can change daily depending on the time of year, anniversaries of family celebrations, her anniversaries, and even the addition of our precious grandchildren has its impact as Abbie would have instantly been their favourite, fun-loving young aunt. She is deeply missed, and that loss continues for us all.”
“I’ve found, for me, that life has grown around her loss. I visualise it as green shoots growing around the black, empty scar from losing Abbie. I’ve often pondered ‘resilience’ and always found myself short of the mark; there are days I don’t want to face. I started back at work (due to employer pressure) only a few weeks after Abb’s passing, which had mixed outcomes. As a positive, it provided a focus external to her loss, responsibility and time in another mindset. So, I see resilience as finding a positive purpose that sits alongside the loss, maintaining life’s growth.”
“Although it can be tough keeping such a small trust buoyant, especially during those darker days, as a close family we continue to find this growth together and individually. We hope that the AFT continues to assist those suffering from CF and that it raises awareness of this devastating condition,” said Beth.
In 2013, Cystic Fibrosis Australia in conjunction with Mediplast launched the Abbie Fennessy Memorial Fellowship. The annual fellowship’s aim is to improve the knowledge and skills of allied health professionals working in CF care to benefit those who have CF.
Abbie’s inspirational legacy lives on.
About Tom Valenta
A former journalist and public relations consultant, Tom Valenta is an author and advocate. In all, he has written thirteen books of non-fiction covering diverse topics including dementia, cystic fibrosis and alcohol and other drugs.
His work in the dementia and cystic fibrosis fields was inspired by personal experiences – he lost his wife, Marie, to Alzheimer’s disease in 2009 and two of his six grandchildren live with cystic fibrosis. In addition to the books, he has written articles, scripts and has advocated in these areas.
Tom’s book on cystic fibrosis, “Every precious breath: Inspirational stories about living with cystic fibrosis,” was published in 2011. For his work, Tom was awarded an Order of Australia Medal (OAM) on Australia Day, 2019.
The views, experiences or comments shared on this website are not medical advice and may not reflect opinions or beliefs of Cystic Fibrosis Community Care. Always seek the guidance of your doctor or other qualified health professional with any questions regarding your health.
