Supporters who leave a gift in their Will to Ataxia UK, help establish a lifeline of support to continue ataxia research and service projects.
Our Friend, Sylvia White, recently left an incredibly generous gift to Ataxia UK in her Will. Her sister Judith shared some touching words with me to help us understand a little more about Sylvia’s life, and what led to this wonderfully generous gift.
Why me? Reflections on Sylvia White’s life with late onset ataxia. Written by her sister Judith.
Just following her 68th birthday, Sylvia, born 10.12.50, went to her GP. Friends had been concerned about her gait, slurred speech and propensity to fall for a while. Concerns she pushed aside, despite breaking an arm and then later a clavicle. Stubbornness prevailed! But a Medical Consultant bellringer friend, concerned about her gait, took her to one side and persuaded her to seek medical advice. She said to me “He knew exactly what the problem was”.
In the Summer of 2019 following appointments with a neurologist and many tests, Sylvia received the diagnosis of ataxia. It was suggested that the cause could be genetic and she opted for genetic testing. This gave her the definitive diagnosis of SCA6 ataxia.
Sylvia was leading a very active life, scoring for the local cricket club, invigilating at the local high school, helping at a mother and toddler group, bellringing, knitting, to name but a few of her activities. She took exotic holidays. “I’m travelling the world in small stages,” she would say. Her greatest joy was watching the meerkats when she visited South Africa. It wasn’t the ataxia that caused her to cease some of these, but COVID and with cricket, it was their change to electronic scoring that required sitting inside. The joy of cricket scoring for Sylvia was to sit out in the sunshine!
Sylvia continued driving, got her blue badge in 2020, and battled to get a designated parking space outside her home, only to have an accident and decide to give up driving at the same time as the space arrived! That was April 2023. But this didn’t stop Sylvia from living an active life. She had many friends willing and able to give her lifts and UBER drivers could turn up to take her somewhere quicker than she could get ready to go out! So she continued to meet with friends and attend her activity groups. She continued to travel and on a trip with friends to Iceland when she fell down some steps, a friend in front of her said, “but Sylvia I took the rail”. Sylvia replied in her usual dry humour fashion, “well, no wonder I fell”.
She would say that sometimes she would sit down and say to herself “Why me?” But she knew there was no answer to that and she wasn’t going to sit down and cry. Sylvia took on what the world had to offer her. She was continuously positive. She joined the Ataxia Organisation and found the advice helpful, and when I visited, there always seemed to be a new well thought out gadget that made life easier. She joined a local exercise group, aimed at helping with balance which not only brought her new friends but she also noticed an improvement in her balance!
When did it all begin? For Sylvia, ataxia was a slow creeping disease. On reflection, she remembers feeling dizzy putting high heels on many years before and thinks this was the first sign. And she ignored the symptoms as they progressed because they became part of her normal. Right until the last three months of her life she was coping in her small one bedroom flat, able to care for herself, get out of the flat and into a car, walk with her frame. Her difficulties started when she developed a chest infection and fell at home, unable to get up she was taken to hospital. Investigations in hospital showed that she had extensive cancer. Treatment was planned, but following a second fall
Sylvia decided to let life take its natural course. She died peacefully in a care home in the early hours of November 24th 2025.
As SCA6 has a genetic cause, this does have implications for her family. Sylvia is one of four sisters and has six nephews & nieces. As a younger sister, I decided to be tested and am living without ataxia. My sister Christine, struggling with walking and speech, has been diagnosed with SCA6. Her children look at their mother and aunt and are not daunted by their future as they see late onset ataxia as something that brings new challenges and can be positively incorporated into life’s course.
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You can find out more about how you can have a lasting legacy by leaving a gift in your Will, here
Kieran
Individual Giving & Legacy Manager
