We’re proud to announce the finalists of our Little Moments Matter awards which celebrate professionals who have gone above and beyond to support families caring for a loved one with Dravet Syndrome.
We’re delighted to reveal the finalists of the Dravet Syndrome UK’s first Little Moments Matter Awards. These awards shine a spotlight on the incredible health, social care, and education professionals who go above and beyond every day to support families living with Dravet Syndrome. From doctors and nurses to teachers and social workers, each finalist has been recognised for their outstanding dedication, compassion, and commitment. Their efforts help families face the daily challenges of Dravet Syndrome with hope and strength.
Nominated by Lisa: “Lewis has formed a really close friendship with our daughter, allowing her to blossom and become more independent over the last year. This has allowed me to have time away from daily worries which as a carer is huge.”
Nominated by Samantha: “Elaine makes you feel like part of the family. She went above and beyond time and time again over decades. I honestly can’t see how anyone could top Elaine Hughes when it comes to looking after families affected by Dravet.”
Nominated by Charlotte and Sam: “Jade has been a massive support to us right from the start, when our daughter had her second seizure and we were sitting in the fear that she may have Dravet Syndrome. She created a sanctuary through her sensory group, cheering on our daughters milestones and supporting the family with DLA forms and an EHCP. Her positivity and kindness has repeatedly given us hope and direction, leaving the family feeling supported rather than lost.”
Nominated by Meggie: “The whole team at Lyndon house!!! Both of my children have been attending Lyndon house since they were a few years old. We have known them for two decades. They have always and I mean always gone above and beyond for me and my little family. They are extended family.”
Nominated by Toni: “Michelle has been our support before Dravet syndrome was diagnosed. Michelle has supported us when we had to move away and even though we are miles away now, Michelle has always answered any concerns and never judged. Michelle is retired but runs a charity and invites any family from anywhere in the UK and other countries. I call her the real wonder woman.”
Nominated by Louise: “He treats families as valued partners and seeks expert advice globally to create the best care plans. Dr Taylor’s support and encouragement have given us greater confidence and made a lasting positive impact on our family’s experience.”
Nominated by Jamie: “I am nominating my daughter’s 1:1, Jade, because she is truly one of a kind. Jade has gone above and beyond to learn everything about my daughter. She’s also been a source of strength and reassurance for me. Jade is more than a 1:1—she’s a lifeline, a teacher, a listener, and a champion for children and families living with complex needs.”
Nominated by Marios: “Fay ‘gets’ our daughter. She sees her as a person, not just a little girl with Dravet Syndrome. Because of this, she is allowed to be a ‘normal’ little girl. Fay is all about what our daughter can do and maximising on that. She doesn’t focus on the barriers but rather how to overcome them.”
Nominated by Meggie: “Bev has been an absolute tonic of support to not only myself but also for my son. Bev has gone out of her way to always be at the end of a phone for myself and always making sure staff are up to date and making sure our son is being supported in every way possible. Bev is totally selfless and is such a breath of fresh air.”
Nominated by Katherine: “Mrs Trebble has gone above and beyond for 4 years to support our son in school. Her love and support every day made it feel like we were leaving him with family. We can’t put into words just how much positivity, care and support she has shown our family over the years and we would have found leaving our son million times harder without her. We owe our son’s amazingly positive experience of Primary school down to Mrs Trebble and are forever grateful.”
Nominated by Heidi: “My son was diagnosed with Dravet two months before starting nursery. The nursery he was meant to start at, kept holding off and eventually after three months said they would not take him. In come Tiddlers Nursery and without hesitation they said they could accommodate him, got the whole staff trained and were so welcoming and accepting of our son. Having a nursery who are more than willing to support, guide and understand is huge.”
Nominated by Sally for her grandson: “This nursery, without hesitation, accepted our grandson into their care when another nursery refused. They have gone out of their way to educate all their staff in epilepsy care, First aid and Makaton signs. All the staff have been incredible in this small nursery, going above and beyond without hesitation at a time when nurseries are struggling financially.”
Nominated by Lauren: “Our son joined nursery at three years old and was assigned Nicky as his 1:1. They immediately had a special bond. Nicky treats him with extreme care, compassion, tenderness and fun. She is a remarkable, selfless individual. I am nominating Nicky as she has willingly dedicated her working life to adapt to our son’s needs and look after him despite the challenges.”
Nominated by Janeta: “Emily embodies compassion, kindness, and unwavering dedication in every way. Emily is an outstanding example of someone who genuinely cares for families living with Dravet Syndrome. She approaches her work with patience and empathy, always listening with an open heart and ensuring the safety and well-being of our daughter.”
Nominated by Rebecca: “Teo and her staff have been supportive of our son since day one. They set up his care plan well in advance and continuously work with the hospital support team, including taking multiple trainings on seizure care. They have managed his seizures professionally while caring for all children, creating a safe and understanding environment. When our son was in hospital, Teo herself collected our older child from summer camp and ensured their care while we were at the hospital. Their nursery has been an invaluable village for our family during a challenging year. Teo leads with kindness and makes us feel like an extension of their family.”
Nominated by Meggie: “Rebekah has been part of our family circle for over 10 years as ur son’s PA support worker, and didn’t think twice about offering her support whenever we needed her. She has cared for him overnight, school runs, pickups and even tailored her own work around our needs, providing both practical and emotional support. Truly the most selfless, caring, beautiful soul. We would be lost without her.”
Nominated by Meggie our sons: “I’ve known Leanne for years as she has been a support worker to both my boys who have Dravet syndrome. Without her help and support, my son would have ended up in temporary foster care when I needed to have two operations. I will be forever in debt to her.”
Nominated by Georgina: “Our social worker is amazing, she makes sure we all have the right support. Any problem I have I can call her and she will help the best she can, sometimes it’s just to listen to me but that ear to lend is sometimes all we need and she always makes us feel heard and shows us so much compassion.”
Nominated by Jenny: “Stephen brought much-needed stability and genuine commitment after inconsistent social care support. He quickly responds, arranges meetings, and advocates for our son in school and at panels. Stephen’s proactive, compassionate approach prioritises our family’s wellbeing, giving us confidence and reassurance throughout our son’s journey.”
Nominated by Kim: “Karen’s patient, caring approach has built a special trust with our son. She adapts everything to reflect his interests and gives him the chance to enjoy life to the fullest. Her understanding and commitment have truly enriched our son’s life and ours, making her an irreplaceable part of our support system.”
Nominated by Alex: “Emma has absolutely gone above and beyond for not just our son but myself and our family too. She supports us not just with Dravet syndrome but anything related to our son. Any concerns or questions I have are always met with empathy, kindness and confidence. I’m reassured whenever I need to be and never made to feel silly or alone.”
Nominated by Emma: “Doctor Al-Moasseb has always been there for my daughter, and after the scariest six months of our lives, when she was on life support, he was there right by her side fighting her corner all the way. It would be a lovely way to say goodbye to him with this as our daughter transfers over to adult services. He has been with her since she was a baby. He is the most amazing doctor and has helped in so many ways.”
Nominated by Francesca : “Our daughter experienced her first seizure at just four months old, and ever since that life-altering moment, Dr Johann Te Water-Naude has walked every step of this journey with us. His expertise, empathy, and unwavering support have made a life-changing difference to us as a family.”
Nominated by Danielle: “Sue is a remarkable lady. She goes out of her way for my family without any questions asked. She will go to the hospital with our daughter, she will give me support, she will support my other children. She gives her the one to one she so desperately loves. Without Sue we would be lost.”
Nominated by Samantha for her daughter: “Elaine diagnosed our daughter as a baby. She is now 22. Elaine makes you feel like part of the family. She went above and beyond time and time again over decades. When we transitioned into adults, she even kept hold of us as guinea pigs to use as a training handover to our new Neurologist. I honestly can’t see how anyone could top Elaine Hughes…”
Nominated by Marie: “My daughter had not been able to have her blood drawn for four years due to fear stemming from past negative experiences within the medical profession. Iona visited our home and began a six-week process of desensitising our daughter to having a blood test, building trust through gentle exposure. Our daughter successfully had her blood drawn while remaining calm and relaxed, even watching the procedure. Iona is like a member of our family—calm, understanding, patient, and very easy to chat with.”
Nominated by Aditi: “Bev’s support over the years has been great—from last minute requests for extra probes for our daughter’s monitor to independently offering to rearrange our appointments so I don’t have to bring her in and she’ll come to me. Always checking in in case we need anything. Bev’s been a great help and we really appreciate her!”
Nominated by Jo: “From the moment we met Julie she has gone above and beyond to ensure our daughter has had the best possible chance of regaining her lost skills. Not only has she provided valuable physio but she is also always willing to refer us to things she thinks will be of benefit. She advocates for her and champions her. We remain incredibly grateful to Julie for her help, compassion and kindness.”
Nominated by Janeta: “Dr. Chinthapali has been an invaluable part of our Dravet journey. He was the first paediatrician we saw her and has consistently provided expert knowledge, understanding, and compassionate care. He truly embodies the spirit of someone who goes above and beyond, supporting not just our family but many others living with complex conditions like Dravet Syndrome.”
Nominated by Kate: “He is simply amazing. I find because our son isn’t severe on the Dravet spectrum he often gets overlooked but Dr Singh constantly pushes for an even better life for him, striving to continue to try to reduce his seizures and he fights constantly to preserve the cognitive ability he has.”
Nominated by Laura for her son: “We first met Dr. Taylor when our son was in ICU. He took a thorough history and truly listened to what had been going on. Unlike previous doctors who dismissed us, Dr. Taylor pursued genetic testing, which quickly led to a diagnosis of Dravet. At every appointment, we felt listened to, with shared decision-making around medications. He even put our son’s birthday in his calendar to start medication promptly on his second birthday. Dr. Taylor is a passionate advocate for Dravet, he actively supports the charity and participated in the 5k Every Day in May challenge. We need more doctors like him!”
Nominated by Grainne: “Maura has been amazing from the very start of our son’s journey and always just a phone call away. She provides incredible reassurance to us as a family and is wonderful. She has truly made this journey a little easier for us. We are so very thankful—Maura has been an angel in disguise.”
Nominated by Emily: “We have known Dr Siddiqui since our son was just seven months old and he has cared for him locally since his Dravet diagnosis at one year old. His extensive knowledge and honesty mean we always feel we can trust him to have our sons best interests at heart. No matter the time of day, whether in between clinics or after a long shift, Dr Siddiqui always finds time to call or email during a crisis, offering advice and support. His commitment consistently goes above and beyond, and we feel he should be recognised for his dedication and hard work.”
Nominated by Catherine: “Iona has supported my family for the last 15 years, and I truly believe I would not be here today without her dedication. She has consistently gone above and beyond to help both me and my son, stepping in when other services—doctors, social workers, even hospitals—let us down. She has fought our corner at every turn, arranging respite, driving us to appointments, and supporting me through my lowest points. When she supervises student nurses, she always ensures they learn fully about Dravet, encouraging them to hear directly from us about our lives. Her dedication has been lifesaving and life-changing.”
Nominated by Louise: “Dr Taylor is an outstanding advocate for children with Dravet Syndrome. He consults specialists worldwide, adapts treatment plans quickly, and always keeps parents involved in decisions. His compassion and willingness to go above and beyond—whether checking on us during admissions or welcoming us to clinic—make life with Dravet truly more manageable. Families feel genuinely supported by his care and kindness.”
Nominated by Louise: “Sally’s approachable, friendly nature means help and reassurance are never far away. She responds swiftly to emails and isn’t afraid to seek answers from colleagues if needed. In stressful times, she’s there for advice and comfort, supporting us through school transitions and celebrating every victory with our child. Sally’s dedication makes a challenging journey much easier.”
Nominated by Jenny: “Jackie’s expertise and compassion have had a profound effect on our family. She advocates strongly, leads urgent interventions in crisis situations, and ensures our son receives the best care, from the ward to emergency transfers. Jackie consistently puts his safety and wellbeing first, offering reassurance and building a positive bond with our son, who is always delighted to see her on duty.”
Nominated by Lisa: “Lisa has done more than just nurse our daughter—she’s become a steadfast part of our family’s support network. From specialist care to emotional guidance in tough moments, Lisa is always there for us, helping us navigate hospital stays and treatments. Her dedication and care lift our spirits and make the difficult moments easier to bear.”
Nominated by Janeta: “Rob has brought reassurance and empathy to our Dravet journey. His patient, professional approach has empowered our daughter, helping her feel valued and understood. Rob’s guidance and compassion have eased many of our family’s challenges, showing true commitment to supporting families like ours.”
