Latest news with #TuberousSclerosis
Daily Mail
03-08-2025
- Entertainment
- Daily Mail
Poirot star Sir David Suchet reveals his personal heartache after beloved grandson was born with an incurable and 'extremely rare' genetic disease - and how the family have pulled together to get through
It's that time of year when millions of excited Brits are off for the school summer holidays but for many with severely handicapped children, travelling abroad is a incredibly difficult. One such family battling the difficulties of coping with a child suffering complex needs just happens to be the Suchet family, Robert and Lisa, son and daughter in law of award winning TV and film actor Sir David Suchet. In an exclusive interview with Daily Mail, Poirot star Sir David and his daughter-in-law, Lisa Suchet, 43, explain how the whole family has pulled together to get through. 'Thank God over the years we have had a close relationship with grandad, David to help us get through it all,' said Lisa. Sir David, 79, who by his own admission has had a 'lucky life' became a household name playing Agatha Christie's fastidious Belgian detective Hercule Poirot, for 25 years. But he was devastated when his eldest grandchild was born brain damaged and also has a brain tumour. 'It was a shock. Our darling grandson has Tuberous Sclerosis, a very rare incurable disease (in this case caused by a non inherited) gene mutation. He explained. 'He is now 11, but he is non-verbal. 'He can walk, with a very particular gait. But he is a beautiful child. 'I learned it was incurable, it was hard to take in, not many people have heard of it. So I'm now campaigning to raise awareness.' Sir David, who also has a daughter, Katherine - a physiotherapist - with wife Sheila Ferris, added: 'I have four lovely grandchildren. And we are a very close family. 'But the years have passed and I now rent a place down in Wiltshire so Sheila and I can be on hand.' Sir David says he probably inherited his caring paternal ways not from his own father, Jack Suchet, the eminent gynaecologist, who died in 2001, but through his maternal grandfather, James Jarche. A warm hearted, kindly man, Jarche was the celebrated Fleet Street photographer renowned for taking the first picture of Edward VIII and mistress Wallis Simpson. Jimmy, as he was known, always put his arm around Sir David and cuddled him when he was a little boy, recalls the actor, which is exactly what he now does with his own grandson. Lisa (pictured, with her son) and Robert Suchet busy preparing to take their two children to the Canary Islands for their summer holidays WHAT IS TUBEROUS SCLEROSIS? Tuberous sclerosis complex (TSC) is a rare genetic disorder characterised by the growth of non-cancerous tumors in various parts of the body, predominantly the brain, skin, kidneys, heart, eyes, and lungs. The condition is present from birth, though symptoms may not appear immediately. TSC can lead to a range of health problems depending on the location and size of the tumours. 'You can't cure or halt it what my grandson endures, you just have to get on with it,' he said. Meanwhile his son Robert Suchet and wife Lisa are busy preparing to take their two children to the Canary Islands for their summer holidays. 'Travelling with a child so disabled is zero fun, he has known to have a massive meltdown in the airport!' said Lisa with disarming honesty. Lisa met ex Marine, Robert, as part of her Wiltshire extended social circle, she was aware he had a famous father, but he certainly didn't make a 'big thing' out of it. They wed in Sienna, Italy After their son was born, Lisa freely admits in the early the marriage was under such strain she feared 'we would not last'. 'He didn't walk until he was two and a half. His speech is badly affected and his behaviour is like a toddler. He doesn't know how to chew and is still on pureed food. 'His behaviour is constantly challenging , he screams and shouts, and persistently throws things. He gets through three outfits a day due to his problems eating food and toilet habits. 'But in between all this he is so sweet, and loving.' She added: 'Not long after he was born I lost my own father, Ken, suddenly he was only 73, What with the new baby. 'I was grief stricken. Thank God David stepped in a fatherly role, to provide a shoulder to lean on. 'When we first told David the diagnosis, he was just off to Canada to do a theatre, we were all overwhelmed with grief. You grow this child and you grieve for what you thought his life would become, and the life he will never have.' Sir David, a devout Christian, prayed for his grandson and continues to fight for his future. Earlier this year he helped man the Room to Breathe garden at the RHS Chelsea Flower Show run by Tuberous Sclerosis Association, which won a gold medal. 'Both our families have been marvellous,' said Lisa. 'And the thing is, my father in law might be famous but at the end of the day he doesn't act grand, he constantly steps in to be a tower of support, he is a very spiritual man.'
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.
