Latest news with #DravetSyndromeUK
ITV News
03-06-2025
- General
- ITV News
Parents describe being on 'constant watch for seizures' raising child with Dravet Syndrome
Parents have described how they are on 'constant watch for seizures', while raising a child living with Dravet Syndrome. Lynda Davies, 38, and husband Thomas, 40, live with their three children in Port Erin on the Isle of Man. Seven-year-old Lyidan is the only child on the island known to be diagnosed with Dravet Syndrome. Lynda said: "His worst days are very long. He doesn't sleep so he might sleep for an hour all day and that is it, and then you're on constant watch for seizures." Lyidan had his first seizure at eight and a half months old. At 10 months old, a third prolonged seizure resulted in him being induced into a coma. He was blue lighted to hospital at least 50 times in just the first 12 months of his life and was diagnosed with Dravet Syndrome just before his first birthday. Lynda said: "At its worst it's watching your child turn blue, and having to be brave enough to administer his rescue medication". As well as still having frequent seizures, Lyidan has delayed development, which affects his speech, and is unsteady on his feet, all of which are part of how he is affected by Dravet Syndrome. Lynda said: "A lot of Lyidan's triggers are basic life so temperature control he struggles with - excitement, tiredness - everything that would come with just being a child. "He can be playing and the second he goes quiet he's not breathing, he goes blue and he needs rescuing". CEO of Dravet Syndrome UK, Claire Eldred, explains the difficulties of living with the condition. Dravet Syndrome is a rare and devastating neurological condition which encompasses severe epilepsy, learning disability and a spectrum of associated difficulties. It occurs in around 1 in 15,000 live births in the UK, and it is not uncommon for individuals to have multiple seizures day and night, in some cases hundreds. There is also a much higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other epilepsies. Claire Eldred says "It is quite common for there to be a co-diagnosis of autism or ADHD, so it has a huge impact on every day life. "Sadly there is also a higher risk of death with Dravet Syndrome than with other epilepsies so that is really scary for parents, it also means these children can never be left alone, so it is a case of 24/7 monitoring and that lasts for a lifetime". The Davies family are working to raise awareness of Dravet Syndrome and have taken part in a challenge to run 5 kilometres every day for a month. Thomas says "It's important for me to get the word out there, we felt very alone at first and that's why we want to raise awareness for the charity and the message is, there is always help out there so talk to somebody".
BBC News
02-06-2025
- General
- BBC News
Completing walking challenge with rare condition a 'miracle'
A woman has completed a challenge to walk 5km a day during the month of May in order to raise funds and awareness of the rare condition she has. Lucy Murphy, 25, from Exeter, has Dravet Syndrome - a form of epilepsy - and her walk raised money for the charity Dravet Syndrome UK which supports families of those with the Syndrome causes learning disability and a spectrum of associated conditions such as autism, ADHD and speech Murphy's mother, Denise Murphy, said her daughter's accomplishment was a "miracle" after frequent ambulance trips and admissions to intensive care throughout her life. 'Constantly seizing' Ms Murphy lives in supported accommodation and has a carer who helps her daily. She was diagnosed with the condition at the age of three, having had her first seizure at four months old, and she now has the comprehension ability of an eight or nine year old, her mother her early years she was "constantly seizing", Denise Murphy added."We knew every ambulance crew in the area," she said. "We made the decision to move house to be closer to the hospital and never travelled further than a 10-minute radius of our home in Exeter unless we had a nurse with us."Lucy is currently in the longest seizure-free period of her life and we never thought we would be in this position so it's a miracle really."Ms Murphy said she was trying to do as much as she could to raise awareness."If this can spread awareness to others it will make me happy to know I was a part of it," she said. 'Pretty remarkable' Claire Eldred, the Cornwall-based director of Dravet Syndrome UK, also took part in the challenge."What Lucy is doing is incredible," she said. "Dravet is a spectrum and... over 50% of adults need to use a wheelchair, over 50% will have severe to profound intellectual disability and many are non-verbal. "So it is actually pretty remarkable for a person with Dravet Syndrome to be able to take on something like this."
Yahoo
20-05-2025
- Health
- Yahoo
Lewisham mum and five-year-old son's challenge for rare epilepsy condition
A mum and her five-year-old son with a rare form of epilepsy are taking on a challenge to walk, run, or cycle 2k every day in May. Reniece Thomas, from Lewisham, is participating in the #EveryDayinMayForDravet challenge to raise funds and awareness for Dravet Syndrome, a severe form of epilepsy that affects her son, Orion. Orion, who was diagnosed with the condition last year, will join his mum by scooting or riding his bike when he can. Dravet Syndrome is a rare neurological condition that includes severe epilepsy, learning disabilities, and other associated difficulties. Lewisham mum and son raise funds for rare epilepsy condition with #EveryDayinMayForDravet (Image: Dravet Syndrome UK) It affects around 1 in 15,000 live births in the UK and can result in multiple seizures day and night, with a higher risk of SUDEP (Sudden Unexpected Death in Epilepsy) compared to other forms of epilepsy. Orion experienced his first seizure at nine months old and was diagnosed with Dravet Syndrome after months of seizures, tests, and emergency hospital visits. A respiratory infection at the age of three triggered a prolonged seizure, resulting in two days in intensive care. Ms Thomas said: "Our local hospital is Lewisham hospital. "I never thought I would become so familiar with the hospital, and I have lost count of the number of times we have been there. "Orion sits on the milder end of the Dravet spectrum, but the impact on our lives has still come with many challenges. "It's so hard because you are always on high alert looking for signs of seizures. "I want to raise awareness because I feel like there's not enough regard for children with epilepsy and Dravet is much more than epilepsy. "It can feel so isolating, like you are the only one going through it." She added: "The emotional impact of Orion's diagnosis has been immense, and like so many other parents of children with complex needs, my mental health has taken such a huge hit, along with my physical health. "Stress can really take a toll on the body. "That's why I'm walking, running, cycling Every Day in May for Dravet. "To raise money and awareness of the condition, but also to take a step towards rebuilding my own physical and mental wellbeing. "Orion is so sweet and full of joy. "He has shown so much strength and resilience that it inspires me to be brave too. "He really is my hero. "I am incredibly grateful for where he is right now – but I've seen how devastating this condition can be, and how urgently more research, understanding, and family support is needed. "All donations, no matter how big or small, are greatly appreciated and make such a huge difference." The #EveryDayinMayForDravet challenge is a global initiative with hundreds of participants, many of whom are running 5k or 10k each day. It is a family-friendly challenge, with people of all ages and fitness levels taking part, including children. Galia Wilson, chair of trustees at Dravet Syndrome UK, said: "We are so grateful to Reniece and to everyone who is joining in this epic challenge, raising funds and awareness of Dravet Syndrome. "As a small charity, all donations received make a huge difference in helping us to continue our vital work supporting and empowering families, educating professionals, and funding research. "We're so thankful to them and to everyone who is taking part or digging deep for #EveryDayinMayForDravet."
