Our gorgeous, blue eyed, one-year old Freddie died suddenly and unexpectedly on the 10th April 2017, at hospital in London. He was incredibly loved and is missed every single day by his Mummy and Daddy (Amber and Steve), and of course each and every one of his family. Nana and Grandma (in particular) were frequent partners in crime, but Freddie made a huge mark on everyone in his life including Grandpa, Grandad, and all of his many aunties, his uncles and his cousins. His loss also affects our friends, both those very near who saw Freddie often and those further away who had not got to know him as well as they’d have wished. We thought we had the rest of our lives with Freddie, to play with him, to watch him grow. To begin to walk and talk and learn to chase the cat. To do all the other things that we now can’t watch him learn or accomplish. He was and always will be, our little superhero, and we are forever proud of him.
As we write this update late in March 2018, we are almost at what would have been Freddie’s 2nd birthday, and that is to be followed up very quickly by the first anniversary of the day he died. We don’t yet know how we will mark these days and of course remain heartbroken to have lost him. Our lives have been irrevocably changed by his loss and it’s been impossibly hard to navigate the last year without him.
One of the hardest things that has happened since Freddie’s death is learning that he had a rare life-limiting form of childhood epilepsy called Dravet syndrome. This severe form of epilepsy is associated with a high incidence of sudden and unexpected death in epilepsy (SUDEP). After consideration, it is now thought that what happened to Freddie was a SUDEP - that he died as a result of SUDEP because he had Dravet syndrome.
Freddie was the happiest and most smiley of little boys; always cuddly, wriggly and with a very healthy appetite. You just could not fill him up. However, during his little life, Freddie spent more time in hospitals and at the doctors than anyone of any age should, and life was often very tough. His prolonged seizures began when he was six months old and they continued up until the weeks before he died. Each seizure occurred alongside an illness or temperature, and some were over an hour long (sometimes Freddie’s seizures were what is called a status epilepticus). It is hard to write about how frightening and difficult Freddie’s seizures were to live with. Many children do have ‘febrile’ (short fever-related) seizures that although alarming to experience, are very different to Freddie’s symptoms. Because of the severity of his seizures Freddie was diagnosed with epilepsy when he was 8 months old. Between seizures he was happy and resilient and made firm friends wherever he went – he was a friendly little chap who liked to wave at anyone. He got very good at taking his daily cherry flavoured anti-convulsant medicine, and we had emergency seizure medicine to give him at home if a new seizure began, but his symptoms had begun to change and were becoming harder to pin down.
When Freddie died, and we first set up this page we didn’t know exactly what type of epilepsy he had yet, although there were possibilities. We were waiting for genetic test results to tell us more. It can take a long time for these sort of genetic results and Freddie's were returned quite a while after he died. As his parents we were also tested, to be able to give the doctors a better idea of how significant Freddie’s results were and all this has taken more time. The waiting for answers has been very hard.
As we have written above, we now know Freddie had Dravet syndrome. This rare and severely disabling type of childhood epilepsy begins in infancy and is thought to affect approximately 1 in every 19,000 people. Usually, as happened with Freddie, the first seizure takes place in the first year, and most seizures accompany a high fever caused by an illness. Dravet often doesn’t respond to conventional anti-epileptic medicine and is most often caused by mutations to the SCN1A gene which occur spontaneously - rather than being inherited. Freddie's results tell us he had a new and previously unrecorded change in the SCN1A gene. Put simply, this was the cause of his seizure disorder.
Epileptic seizures however, are just one part of Dravet syndrome as there are various other health conditions and symptoms which usually increase from the second year onwards. A child’s development may slow down or regress, sometimes severely, and often they experience mobility issues. Dravet sufferers are prone to status epilepticus which needs swift medical assistance to stop it, and to reduce the risks of a long seizure. The course of Dravet syndrome is variable from one child to another.
Learning about Freddie’s Dravet syndrome and his symptoms has been extremely important to us but the hardest part has been finding out that children with Dravet syndrome are at a higher risk of sudden unexpected death in epilepsy (SUDEP) than children with other types of epilepsy. Freddie’s death however, despite his condition was completely unexpected.
None of this is ever going to be easy to talk about, either for us as Freddie’s parents, or for others who talk with us about Freddie. But, without sharing we cannot raise awareness of both Dravet syndrome and of epilepsy related deaths including SUDEP. We wish to do this so that Freddie’s death counts. We also want to raise awareness about child bereavement, hoping that by starting conversations or telling our story to others it can contribute to breaking down the isolation and loneliness that surrounds parents and families after losing a child.
We want to remember Freddie in a meaningful way, and that’s why we set up this fundraising page in May 2017 asking our families and friends to make donations in his name. We initially chose to support four charities: Homerton Hope (Starlight Paediatric Ward), Friends of Royal London, Epilepsy Society and The Lullaby Trust. These charities directly supported Freddie (and us) whilst he was alive, were the hospitals where he was treated, or have considerably helped us as bereaved parents since his death – particularly The Lullaby Trust who support families living with the sudden and unexpected death of infants and children. Their ‘befriending’ initiative has given us over the phone parent-to-parent understanding like no other.
Last autumn we added SUDEP Action to Freddie’s fundraising page for their considerable support to our family whilst we found out about Freddie’s diagnosis and the likelihood of Freddie suffering a SUDEP. These were tough issues, but they somehow managed to give us the facts with the gentlest of touches. They also have been marvellous in the practical advice and support in advance of Freddie’s inquest which only concluded recently.
Because we now know about Freddie’s diagnosis of Dravet syndrome we are adding Dravet Syndrome UK to the fundraising page too. We’ve relied considerably on their clear and well written online resources to learn and understand our son’s condition and the expert support that they provide to parents and clinicians for this underdiagnosed syndrome is extraordinary. The services they offer for families living with a child with Dravet are a lifeline to so many who badly need it. Many children with Dravet syndrome have a good life expectancy, however children who develop severe disabilities may have problems which will affect their lifespan. Unfortunately there is no cure for Dravet syndrome. Treatment focuses on controlling or minimising seizures in order to minimise their impact on development. Much support is required for the challenges that children like Freddie with Dravet syndrome, and their families might face.
To date almost £8,000 has been raised on and offline in Freddie’s memory and to say we are overwhelmed by the generosity of our family and friends, and friends of friends is an understatement. Other kind souls who have only read about Freddie and yet supported us anyway have also taken us by surprise. Your donations are, we know, greatly appreciated by the charities involved, and in time we hope to give some updates to what your money has contributed towards in Freddie’s name.
We are immensely proud to have raised this enormous sum with all of your individual donations. We want to say a very big thank you, on behalf of ourselves and of course on behalf of Freddie who we wish could have known you all better.
Losing Freddie has been indescribable. We struggle to find the words. But the year Freddie lived, he filled our lives and our hearts up. Freddie’s little life - his brilliant year and his superhero smile are what we try and remember the most. We always, always would love to talk about him - we may cry, it may be hard, but we can reassure you that no one can upset us any more than we already are, by just talking to us about him.
Darling Freddie, our little sausage, we love you so. We miss you so.
Homerton Hope - Starlight Paediatric Ward
During Freddie's life he was admitted to the Starlight paediatric ward many times as a result of his seizures. The care and support that he/we received as a family was incredible; always compassionate, personal and very dedicated. Raising money for Startlight for things like: new vein finders to make cannulisation of chubby infants less painful and stressful, access to toys for the small patients or just to keep the current high standards of patient and family care going is a hugely important thing for us to do.
Friends of Royal London
Freddie's seizures were being investigated by the neurology team at the Royal London and the PCCU (Paediatric Critical Care Unit) ward is where we ultimately had to say goodbye to Freddie. We would like to support the work that this hospital does so that other families, should they find themselves in the unfortunate situation that we did, can benefit from the compassion, professionalism and quality of care that Freddie, Amber and I have.
In Freddie's final hours the staff in PCCU helped us with the most incomprehensible and unbearable situation any parent can imagine. They allowed Amber and I the time and dignity to say goodbye to our darling son the way we wanted to; with hours of cuddles and kisses until the final moment.
Epilepsy Society
Freddie started to have seizures when he was 6 months old and whilst this is not uncommon, the complexity and severity of Freddie's in someone so young is uncommon. He was diagnosed as suffering from Epilepsy when he was 8 months old and he was being treated as such. Unfortunately, his treatment had not yet managed to get his seizures under control although we were hopeful for the future. Epilepsy Society fund vital research and support families or individuals, young and old, that suffer from epilepsy. Seeing any infant, especially your own child suffering a seizure is utterly heart-breaking and dealing with a sudden unexpected death even more so. Research being done by the Epilepsy Society into the causes and treatment of epilepsy and increased risk factors of SUDEP (sudden and unexpected death in epilepsy) is vital. We are keen to support this research to help others in the future.
The Lullaby Trust
In the time since Freddie died we have been supported by the wonderful Lullaby Trust Bereavement helpline, with both practical advice and with emotional support that has been much appreciated. By putting us in touch with other families that have suffered a similar death of a child we have been able to talk to someone that genuinely understands the pain we are going through and all that follows. The Lullaby Trust continues to fund research into SIDS (Sudden Infant Death Syndrome) and SUDC (Sudden and Unexpected Death in Childhood) and given Freddie’s sudden death feels particularly important to us.
SUDEP Action
SUDEP Action is dedicated to raising awareness of epilepsy risks and tackling epilepsy deaths including Sudden Unexpected Death in Epilepsy. They are the only UK charity specialised in supporting and involving people bereaved by epilepsy. In the time since Freddie died in April 2017 they have helped us massively. Supporting us with expert advice whilst we were learning about Freddie's Dravet syndrome and how he could have died, advising us practically in advance of Freddie’s inquest and just being there to listen when we were struggling to make sense of everything. Through all of the horrendous stages and difficult facts we have needed to take in, the team at SUDEP Action have helped us.
Dravet Syndrome UK
Dravet Syndrome UK is an independent charity dedicated to improving the lives of those affected by Dravet syndrome. We’ve relied considerably on their up-to date online resources and research to learn and understand our son’s condition over these very difficult months. Their dedication to improving the lives of those affected by Dravet syndrome through support, education and medical research can be a lifeline to families with a night-time assistance programme to help monitor seizures, financial help with monitors and grants, annual family trips and a community network to link families up across the UK. Dravet Syndrome UK also raise awareness and understanding of this under-diagnosed condition within the professional community so that early and more accurate diagnosis of Dravet syndrome can be made.
