Latest news with #LisaSuchet
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.'
Yahoo
21-02-2025
- Health
- Yahoo
Seven things to know about epilepsy in children as new drug rolled out
Children in England living with a rare and severe form of epilepsy could soon benefit from a new drug being rolled out on the NHS. Fenfluramine has been recommended by the National Institute for Health and Care Excellence (NICE) for patients aged two and over with Lennox–Gastaut syndrome (LGS). LGS is a rare and severe form of epilepsy that starts in early childhood and is resistant to many treatments. It is thought that around 1-2% of the 60,000 children in England with epilepsy have LGS. The drug, the first non-cannabis-based treatment approved for this form of epilepsy, is taken as an oral liquid medicine daily and works by increasing the levels of serotonin in the brain to reduce seizures. Lisa Suchet, whose 10-year-old son has LGS, says the drug offers her son hope of "seizure freedom". "My son has suffered with seizures since he was five weeks of age, including drop seizures, which are the most devastating," she said. "They occur without warning, cause immediate collapse and the risk of head injury is high due to the sudden fall." Suchet says until now there have been so few effective drugs for seizure control. "Many don't work for all patients; many have debilitating side effects or interactions with other meds a patient might have to take," she explains. "That there is another option now available, which has shown effective results and minimal side effects is a huge comfort. It is essentially providing a chance of seizure freedom, which is essentially another chance at life really; for the patient and the family or carers who are impacted so significantly by this awful disease." Epilepsy is a neurological condition (affecting the brain and nervous system) where a person has a tendency to have seizures that start as a disruption of signals in the brain. Some children stop having seizures after a period of being on treatment, others, however, need treatment for long periods. The condition is more common than many people realise, with around one child in every 200 living with epilepsy. The NHS says that while there is sometimes a clear reason for epilepsy developing, for example a severe blow to the head, an infection of the brain such as meningitis, or brain damage due to lack of oxygen during a difficult birth, in other cases it isn't obvious. It's possible a child's epilepsy could be partly caused by their genes affecting how their brain works, as the NHS estimates around one in three people with epilepsy have a family member with it. Seizures are caused by a sudden burst of electrical activity in the brain, which temporarily disrupts the way messages are passed between brain cells. There are a number of different types of epileptic seizure, but the type a child has depends on which part of their brain is affected by the condition. The Epilepsy Society says there are two main types of seizure: focal seizures and generalised seizures. "Focal seizures start in only one side of the brain and generalised seizures affect both sides of the brain," the charity explains. "Generally, adults and children have the same types of seizure. However, some may be more common in childhood (for example, absence seizures which can be very brief and are often mistaken for 'daydreaming' or not paying attention)." The kind of symptoms a child experiences during a seizure can include: jerking of the body repetitive movements unusual sensations such as a strange taste in the mouth or a strange smell, or a rising feeling in the stomach. In some types of seizure, a child may be aware of what is happening. In other types, a child will be unconscious and have no memory of what happened afterwards. Some children may have seizures when they are sleeping (sometimes called "asleep" or 'nocturnal' seizures). The Epilepsy Society says some children's seizures can occur in response to triggers such as stress, excitement, boredom, missed medication, or lack of sleep. The charity recommends keeping a diary of your child's seizures, which can help to see if there are any patterns to when they happen and what may have triggered them. If a child experiences a tonic-clonic seizure (when their body goes stiff and the type of seizures most people associate with epilepsy) the Great Ormond Street Hospital recommends not trying to stop it. "Instead, move any furniture out of the way, try to loosen any tight clothing around the neck and stay with the child until the seizure has finished," the site explains. "As soon as uncontrolled movements finish, lay the child on their side in the recovery position." If a child has another type of seizure, it is recommended you sit them down quietly and stay with them until they are fully recovered and alert. Reassure the child calmly. The NHS recommends calling 999 for an ambulance if your child: is having a seizure for the first time has a seizure that lasts more than 5 minutes has lots of seizures in a row has breathing problems or has seriously injured themselves The number and type of seizures your child is having may change over time. But some children do outgrow their epilepsy by their mid to late teens. According to the Epilepsy Society this is called "spontaneous remission". There is currently no cure for epilepsy, but treatment can help most children with epilepsy have fewer seizures or stop having seizures completely. medicines called anti-epileptic drugs – these are the main treatment surgery to remove a small part of the brain that's causing the seizures a procedure to put a small electrical device inside the body that can help control seizures a special diet (ketogenic diet) that can help control seizures In very rare cases when medication does not help, and scans indicate a structural brain abnormality is the cause, surgery may be suggested. Read more about epilepsy: First UK child to have epilepsy device fitted in his brain has huge reduction in seizures (Independent, 2-min read) I had a seizure minutes before my final exams at uni (Yahoo Life UK, 11-min read) Epilepsy myths debunked as study reveals most Brits still believe misconceptions about the condition (Yahoo Life UK, 3-min read)
Yahoo
20-02-2025
- Health
- Yahoo
Seven things to know about epilepsy in children as new drug rolled out
Children in England living with a rare and severe form of epilepsy could soon benefit from a new drug being rolled out on the NHS. Fenfluramine has been recommended by the National Institute for Health and Care Excellence (NICE) for patients aged two and over with Lennox–Gastaut syndrome (LGS). LGS is a rare and severe form of epilepsy that starts in early childhood and is resistant to many treatments. It is thought that around 1-2% of the 60,000 children in England with epilepsy have LGS. See for yourself — The Yodel is the go-to source for daily news, entertainment and feel-good stories. By signing up, you agree to our Terms and Privacy Policy. The drug, the first non-cannabis-based treatment approved for this form of epilepsy, is taken as an oral liquid medicine daily and works by increasing the levels of serotonin in the brain to reduce seizures. Lisa Suchet, whose 10-year-old son has LGS, says the drug offers her son hope of "seizure freedom". "My son has suffered with seizures since he was five weeks of age, including drop seizures, which are the most devastating," she said. "They occur without warning, cause immediate collapse and the risk of head injury is high due to the sudden fall." Suchet says until now there have been so few effective drugs for seizure control. "Many don't work for all patients; many have debilitating side effects or interactions with other meds a patient might have to take," she explains. "That there is another option now available, which has shown effective results and minimal side effects is a huge comfort. It is essentially providing a chance of seizure freedom, which is essentially another chance at life really; for the patient and the family or carers who are impacted so significantly by this awful disease." Epilepsy is a neurological condition (affecting the brain and nervous system) where a person has a tendency to have seizures that start as a disruption of signals in the brain. Some children stop having seizures after a period of being on treatment, others, however, need treatment for long periods. The condition is more common than many people realise, with around one child in every 200 living with epilepsy. The NHS says that while there is sometimes a clear reason for epilepsy developing, for example a severe blow to the head, an infection of the brain such as meningitis, or brain damage due to lack of oxygen during a difficult birth, in other cases it isn't obvious. It's possible a child's epilepsy could be partly caused by their genes affecting how their brain works, as the NHS estimates around one in three people with epilepsy have a family member with it. Seizures are caused by a sudden burst of electrical activity in the brain, which temporarily disrupts the way messages are passed between brain cells. There are a number of different types of epileptic seizure, but the type a child has depends on which part of their brain is affected by the condition. The Epilepsy Society says there are two main types of seizure: focal seizures and generalised seizures. "Focal seizures start in only one side of the brain and generalised seizures affect both sides of the brain," the charity explains. "Generally, adults and children have the same types of seizure. However, some may be more common in childhood (for example, absence seizures which can be very brief and are often mistaken for 'daydreaming' or not paying attention)." The kind of symptoms a child experiences during a seizure can include: jerking of the body repetitive movements unusual sensations such as a strange taste in the mouth or a strange smell, or a rising feeling in the stomach. In some types of seizure, a child may be aware of what is happening. In other types, a child will be unconscious and have no memory of what happened afterwards. Some children may have seizures when they are sleeping (sometimes called "asleep" or 'nocturnal' seizures). The Epilepsy Society says some children's seizures can occur in response to triggers such as stress, excitement, boredom, missed medication, or lack of sleep. The charity recommends keeping a diary of your child's seizures, which can help to see if there are any patterns to when they happen and what may have triggered them. If a child experiences a tonic-clonic seizure (when their body goes stiff and the type of seizures most people associate with epilepsy) the Great Ormond Street Hospital recommends not trying to stop it. "Instead, move any furniture out of the way, try to loosen any tight clothing around the neck and stay with the child until the seizure has finished," the site explains. "As soon as uncontrolled movements finish, lay the child on their side in the recovery position." If a child has another type of seizure, it is recommended you sit them down quietly and stay with them until they are fully recovered and alert. Reassure the child calmly. The NHS recommends calling 999 for an ambulance if your child: is having a seizure for the first time has a seizure that lasts more than 5 minutes has lots of seizures in a row has breathing problems or has seriously injured themselves The number and type of seizures your child is having may change over time. But some children do outgrow their epilepsy by their mid to late teens. According to the Epilepsy Society this is called "spontaneous remission". There is currently no cure for epilepsy, but treatment can help most children with epilepsy have fewer seizures or stop having seizures completely. medicines called anti-epileptic drugs – these are the main treatment surgery to remove a small part of the brain that's causing the seizures a procedure to put a small electrical device inside the body that can help control seizures a special diet (ketogenic diet) that can help control seizures In very rare cases when medication does not help, and scans indicate a structural brain abnormality is the cause, surgery may be suggested. Read more about epilepsy: First UK child to have epilepsy device fitted in his brain has huge reduction in seizures (Independent, 2-min read) I had a seizure minutes before my final exams at uni (Yahoo Life UK, 11-min read) Epilepsy myths debunked as study reveals most Brits still believe misconceptions about the condition (Yahoo Life UK, 3-min read)
The Independent
20-02-2025
- Health
- The Independent
Hope for children with severe form of epilepsy as NHS rolls out new drug
Hundreds of children in England with a rare and severe form of epilepsy are set to benefit from a new drug being rolled out on the NHS. Fenfluramine has been recommended by the National Institute for Health and Care Excellence (Nice) for patients aged two and over with Lennox–Gastaut syndrome (LGS). It is the first non-cannabis-based treatment approved for this form of epilepsy, according to NHS officials. For children and families living with Lennox–Gastaut syndrome, every day can be challenging, facing unpredictable and life-limiting seizures, and this new treatment option on the NHS will now offer new hope, giving many the chance for greater stability and a better quality of life Professor Stephen Powis The drug is taken as an oral liquid medicine daily and works by increasing the levels of serotonin in the brain to reduce seizures. LGS is a rare and severe form of epilepsy that starts in early childhood and is resistant to many treatments. It is thought that around 1-2% of the 60,000 children in England with epilepsy have LGS. Professor Stephen Powis, national medical director at NHS England said the recommendation offers patients and their families 'new hope'. 'For children and families living with Lennox–Gastaut syndrome, every day can be challenging, facing unpredictable and life-limiting seizures, and this new treatment option on the NHS will now offer new hope, giving many the chance for greater stability and a better quality of life. 'It's fantastic news for hundreds of families that there's a proven, evidence-based new medicine that can be taken at home to help control and reduce their child's seizures and, for example, lower the risk of them experiencing injuries and needing to go to hospital. 'Fenfluramine will offer a vital alternative for those who can't tolerate existing cannabis-based treatment and the fast-tracking of this treatment to be available from today is another example of the NHS' commitment to ensuring access to the best therapies that deliver real benefits to patients as well as value for the taxpayer.' Previously, the only Nice-recommended treatment for LGS was the cannabidiol Epidyolex with the medication clobazam, which was approved in 2019. Clinical trials suggest fenfluramine can slash the frequency of seizures that cause patients to lose consciousness and muscle control, known as drop seizures, by 26.5% on average. NHS England is using its Innovative Medicines Fund to fast-track the treatment to eligible patients. It is essentially providing a chance of seizure freedom, which is essentially another chance at life really; for the patient and the family or carers who are impacted so significantly by this awful disease Lisa Suchet, whose 10-year-old son has LGS Helen Knight, director of medicines evaluation at Nice, added: 'The often distressing and life-limiting nature of this very difficult-to-control epilepsy means that any new treatment options are particularly welcome. 'In recommending fenfluramine, the independent committee took into account the rarity and severity of Lennox Gastaut syndrome, the significant impact it has on the quality of life of people with the condition and their families and carers, and the high need for effective treatments, particularly for people who aren't able to take cannabidiol with clobazam.' Lisa Suchet, whose 10-year-old son has LGS, welcomed the recommendation. 'My son has suffered with seizures since he was five weeks of age, including drop seizures, which are the most devastating,' she said. 'They occur without warning, cause immediate collapse and the risk of head injury is high due to the sudden fall. 'There are so few effective drugs for seizure control. Many don't work for all patients; many have debilitating side effects or interactions with other meds a patient might have to take. 'That there is another option now available, which has shown effective results and minimal side effects is a huge comfort. 'It is essentially providing a chance of seizure freedom, which is essentially another chance at life really; for the patient and the family or carers who are impacted so significantly by this awful disease.'
