Latest news with #TuberousSclerosis
BBC News
22-05-2025
- Entertainment
- BBC News
Tuberous Sclerosis garden wins gold at RHS Chelsea Flower Show
A garden that was designed to raise awareness for the Tuberous Sclerosis Association has won a gold medal at the RHS Chelsea Flower Donnelly and Catherine Gibbon volunteer at Amersham Hospital in Buckinghamshire and rejuvenate the gardens used by staff and "Room to Breathe" garden was inspired by Ms Donnelly's experiences waiting in hospitals for her 15-year-old son Alex, who has Tuberous Sclerosis Complex, to have the flower show, the garden will be moved to Amersham Hospital, which will become its permanent home. Tuberous sclerosis is a rare genetic condition that causes mainly benign tumours to develop in different parts of the body, such as the brain, heart, and Donnelly recalled: "My memory is sitting on a plastic chair in a clinical corridor waiting for news of his operations."I thought, wouldn't it have been amazing to have a little space outside space. I could've gone to [it] to escape, have a moment to yourself."So we've created this little corner of a hospital courtyard where a parent could go to and have that moment to themselves." The design won its trophy in the Balcony and Container Garden was created with planting containers off the ground, at various heights, in a 12 square-meter space.A "cocoon-like hanging chair" was included, which Ms Gibbon said evoked the feeling of having "a nice hug you really need when you're in hospital".During the show, the garden was visited by celebrities such as actor Sir David Suchet, Strictly Come Dancing star Nadiya Bychkova and singer Alexandra Donnelly said: "David Suchet was so lovely and spent so much time with us, talking to the public about why it was important to raise awareness about the Poirot actor has regularly supported the charity in public. Follow Beds, Herts and Bucks news on BBC Sounds, Facebook, Instagram and X.
Global News
05-05-2025
- Health
- Global News
Kelowna mom shares difficult journey of daughter living with rare disease
A Kelowna, B.C., woman is helping spread awareness about a rare disease that has touched her family in a personal way. May marks Tuberous Sclerosis (TS) Awareness Month in Canada, with May 15th being Global Tuberous Sclerosis Day. 'It affects one in 6,000 to one in 10,000,' Cindy Fairs said. TS is characterized by benign tunours in the brain and many other parts of the body. Fairs' daughter Shayla was diagnosed with TS when she was only seven-and-a-half months old. 'She had had a seizure and the doctor didn't initially recognized it as a seizure. Two days later it was a status seizure and we ended up in the hospital and we almost lost her at that point,' Fairs said. Story continues below advertisement 'She ended up going through three hospitals and ended up at B.C. Children's Hospital before she was diagnosed.' That was 1989 and while Shayla is now 36 years old, she is developmentally at the level of a child between three and five years old. 'She doesn't know how to count, she doesn't know her numbers, she doesn't know her letters, she doesn't know my name,' Fairs said. Fairs said brain surgery was considered when Shayla was five years old but it never happened. 'At that time they had never done brain surgery on anyone with tuberous sclerosis in Canada, so we were looking to go to California,' Fairs said. Get daily National news Get the day's top news, political, economic, and current affairs headlines, delivered to your inbox once a day. Sign up for daily National newsletter Sign Up By providing your email address, you have read and agree to Global News' Terms and Conditions and Privacy Policy 'We weren't able to go because of the cost to do the surgery and all of what comes with that and BC Medical would not cover it.' Fairs said the idea was re-visited again when Shayla was 14. 'By then, surgery was happening for individuals with tuberous sclerosis in Canada but there had been so many tumours that had developed in her brain, they could not isolate them so it wasn't an option any longer,' Fairs said. 2:18 Fight for B.C. girl's life-changing medication Fairs said thinking back to when her daughter was diagnosed in her first year old life brings back difficult memories. Story continues below advertisement 'When I think about it, it takes me back to a time of isolation and having very little support and no support,' she said. Fairs added that the only organization she found to lean on was in the United States. 'It was a lifeline,' Fairs said. The kind of lifeline she said was badly needed in Canada, so despite dealing with her daughter's challenges, Fairs got to work and co-founded Tuberous Scelrosis Canada, a non-profit organization now in its 35th year. She's hoping that by raising awareness, it prevents others from feeling the same kind of isolation she did all those years ago. Fairs said that she is only aware of four other families dealing with the disease in the Central Okanagan. Describing Shayla as her everything, Fairs said that four years ago her daughter and her best friend, who is also dealing with health challenges, moved into a place of their own marking an important milestone. 'They have 'round-the-clock care that comes in and supports there two gals and looks after them,' Fairs said. 'She's very happy and it gives her some independence.' Fairs wants to provide hope to others and ensure that people know there are supports in place for those experiencing TS and their loved ones. Story continues below advertisement More information can be accessed on the Tuberous Sclerosis Canada website.
