Jazz is a 25 year old wheelchair user who, as a little girl, set her sights on becoming a ballet dancer until a cruel turn of fate rendered her almost unable to walk. Were it not for a simple gesture by a friend, this determined young woman may never have had the chance to shine as a sailor.
Having recognised that her painful ankles had brought the curtain down on any dancing career, she happily accepted a voucher from a friend offering her the chance to try her hand at dinghy sailing – she was just 13. Today, describing that first sail Jazz says: “It was super windy, freezing cold and pouring with rain and I absolutely loved it. So much so that I now have a shelf full of trophies to prove my success and passion for a sport that has handed me a life away from the constraints of a wheelchair.”
Unable to afford her own dinghy or sailing lessons, Jazz joined her local club and crewed on other peoples’ boats. She soon progressed onto Lasers and, with the help of the Andrew Simpson Foundation, started competing both nationally and internationally. Next came a Fireball – fun, fast but somewhat wobbly but, with a permanent crew, she sailed at Hayling Island and trained with Tom Gillard and others at the top of the fleet and was regularly finishing in the first 10.
Meeting Jazz today along with her stepfather, it’s hard to believe that she grew up in an abusive household. At 18 she left home and by a stroke of luck, was taken into foster care by a general practitioner. Up to that point, Jazz had never been to a doctor and just believed the pain she’d always suffered from a child was the norm. With the concern and care shown by her new foster mum, Jazz was finally diagnosed with Ehlers Danlos Syndrome, a genetic condition called hypermobile, but because it had gone untreated for so long, her body had begun to collapse. From being little, she had been walking on broken ankles wedged with fragments of bone which was why her legs couldn’t bear her body weight. After three bouts of surgery to have the fragments of bone removed, she was left with unstable ankles and that, combined with both ATFL (anterior talo-fibular ligament) snapping, meant she was confined to a wheelchair. But was this going to stop her sailing? No way!
Before long, the Fireball was becoming increasingly difficult and dangerous to sail and at the 2018 Shoreham Open she passed out causing a capsize which spelled the end of her Fireball days. “I transitioned into smaller boats, a 420, but was still struggling due to increasing dislocations and being unable to bear weight through my ankles for long periods of time. It was at the 420 nationals in 2019 where I met Joff McGill (head of RYA Sailability) who introduced me to the charity and their adapted boats which I hadn’t known existed.” Says Jazz. “I immediately fell in love with the 2.4mR and have been racing it ever since.”
Jazz goes on to explain where she is today. “My condition is progressive which means that although I was born with the disorder, I essentially grew up able bodied but with some odd quirks which I assumed were normal. EDS comes with a lot of associated conditions of which I have most, including MCAS, POTS and Gastroperesis. These affect me in different ways. MCAS, which is mast cell activation syndrome means I have random allergic reactions to things and my body is essentially always reacting so I have super high histamine levels. POTS. which is postural orthostatic tachycardia syndrome, means I pass out regularly, usually triggered by change in position. Gastroperesis means I am unable to eat or drink. Despite several feeding tubes, as my condition progressed, I was diagnosed with complete gastrointestinal failure which has led to me now being fed through a central line directly into my heart. I also have underlying heart failure. All of this means that I have a potentially short but unknown life expectancy depending on the rate that my condition progresses. I have been given an estimate of between two and 10 years.”
This means is that it’s impossible for Jazz to make long term plans but she certainly has her sights set on the Paralympics. Disappointingly, because sailing has been taken out the Paralympics, it’s meant the RYA has been unable to financially support any para sailors competing at a high level. But still Jazz fights on and takes every opportunity she can to do the things she loves and is currently at university studying mechanical engineering, going into her final year in September 2022
Were proof needed of Jazz’s determination to sail, one should listen to her speak. Her drive to be self-funding is evident, currently through a student loan. “I have been reliant on both large charity and smaller local charity funding. My 2.4mR I own was donated to me through a charity and they have helped fund events. I also had local funding through Simpson Marine and the OS&B society. I’m always trying to get more experience competing at high pressure events so that I’ll be in a strong position if sailing does get re-introduced to the Paralympics.”
In May 2022, Jazz was put in contact with the Andrew Cassell Foundation which meant the chance to try out a Sonar Keelboat and build on her sailing experience. She arrived in Cowes at the end of June and met up with ACF director, Matt Grier and some of our ACF Volunteers.
Taking up the story, Matt explains. “Knowing Jazz had a lot of experience and was interested in taking part in Cowes Week, we needed to get some practise in ASAP to check she would be capable of helming a Sonar – a 23ft open keelboat. This would give us time to prep so we linked her up to a Thursday Evening Race.
“We knew initially that she needed to be in a seat for side support but could handle a bench and bar. On the water, the bench worked fine unless she slipped slightly and didn’t have the ankle support to be able to brace and bring herself back to the windward side. Saying that, we still had a cracking race.
“Pressure was now on to fast track the development of a purpose designed seat that would enable Jazz (and future disabled sailors) to safely race. With August and Cowes Week looming, there was less than a month to build a frame that would fit the Sonar and, find a willing person with the skills to fit it. Help arrived in the form of Fergie, a brilliant local welder who had been supporting another disabled sailor within the Foundation.”
Almost every day of the working week, Matt and Fergie could be found on the boat as the frame, tiller and steering came together. And it didn’t just stop there, as tweaks and reworkings continued throughout Cowes Week.
Matt continues: “Teaming our ACF Sonar, Spare Part Skipper Mark Matthews, with Jazz on the Helm, made things competitive but Mark has always brought a calm nature to sailing and as a sail maker, can certainly get a boat going. The new seat had been tested prior to Cowes Week but in the stronger winds Jazz had a problem and on the first day, a nut on a bolt worked itself loose which meant she had to retire. Fergie however, the welder come down each day after sailing to make the slight adjustments. And the results spoke for themselves coming at first in 7th place and progressing as the week went on to a 4th – beating the winning team, Jenny, on the Thursday. ACF Spare Part ended up finishing in a very respectable 8th overall.
“Post Cowes Week” says Matt, “We now have a whole new group of friends and supporters on which we will thrive and Jazz will be back, not just to race but also mentored as part of the ACF Team, knowing she can always count on us for support as she progresses her Paralympic dream.”
Pre-Cowes Week 2022 – Testing the new fixed seat.
Cowes Week 2022 – Thanks to Martin of www.sailingimages.co.uk for donating this image.
