A Bath woman has set off on a fundraising 315-mile bike ride in memory of her sister from Keynsham who died after her rare condition was misdiagnosed.
The bike ride getting under way at Land’s End
Jackie Duffy, from Weston Village, aims to raise £4,500 for Aortic Dissection Awareness UK & Ireland as a tribute to her sister Sharon Goddard.
Jackie, her husband Tony and family friend Tracey Belgin-Lee are pedalling from Land’s End to Bristol on their THINK AORTA Charity Ride. Their eight-day journey began yesterday, Thursday 27th March.
Jackie said: “My sister Sharon was a 53-year-old mum-of-three from Keynsham. She had Loeys-Dietz Syndrome, a rare genetic connective tissue disorder that primarily affects the heart and aorta.
“On December 18th, 2022, Sharon was returning from a Caribbean holiday when she started experiencing chest pain. She was taken to the hospital by ambulance but was left waiting in a corridor for hours as her condition deteriorated.
“Despite hospital staff being informed of her medical condition, it was not taken seriously.
“By the time she received a CT scan, it revealed a complex aortic dissection – an emergency condition that required urgent surgery. But due to delays in recognising her condition and a lack of available emergency transport, Sharon didn’t make it into surgery until 17 hours later. By then, it was too late.
“An inquest into Sharon’s death ruled that her death was preventable and her care was neglectful. Had she received timely treatment, she would have had a high chance of survival.
“Delays, failures, lack of awareness, and poor decision-making meant we lost a loving wife, mother, sister, and friend far too soon. She left behind her husband Neale and their three daughters, Hannah, Izzy, and Alice.
“We are raising funds to increase awareness of aortic dissection and improve medical education, so no other family has to endure this unnecessary heartbreak. Aortic Dissection claims the lives of 2,000 people in the UK each year, often due to misdiagnosis and delayed treatment.”
Sharon Goddard passed away in December 2022
Jackie said that as a non-cyclist, the ride will be a huge test of physical and mental endurance.
Gareth Owens, founding chair of the national patient charity and leader of the global THINK AORTA campaign, said: “Sharon’s preventable death is an unacceptable tragedy.
“Our hearts go out to Neale, Hannah, Izzy, Alice, Jackie, Tony and to all of Sharon’s wider family and friends on their loss.
“Jackie’s passion for creating positive change for others a result of her sister’s death is palpable. Already, since joining the charity, she has attended the launch of a new patient pathway being rolled out across the south of England to improve aortic dissection diagnosis and treatment, worked as part of a team on our ‘Guide to Bereavement after Aortic Dissection’ and bravely stepped completely out of her comfort zone to present Sharon’s story at the prestigious London Aorta conference.
“Now she is going to cycle from Land’s End to Bristol. It’s a huge challenge for a non-cyclist, but she has been training hard and I have no doubt that her love for her sister and her sheer determination to change things for others affected by this disease will see her through.”
Donations can be made on Jackie’s JustGiving page.
You can read more about Sharon’s story here.
