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Taking Dravet Syndrome Head On, Together
The challenges I face today are very different to those that my family and I faced over a decade ago as we welcomed my son, Arlo, into the world. Diagnosed with Dravet syndrome at the precious age of 3 and a half years, our journey to diagnosis echoes many hundreds of families that have travelled the same path.
I would never have arrived where I am today, had it not been for Arlo. But our Dravet journey started a long time ago now, on Boxing Day, 2007.
For most families, Boxing Day is a special day, a chance to relax and enjoy the festive period. For us, Boxing Day marks the anniversary of my son’s first convulsive seizure. After a festive trip to the local hospital with our 10-week-old son, we were gently reassured by hospital staff that children may experience a seizure during their development, and we were not unusual. Even though, Arlo’s had lasted around 25 minutes.
A follow-up appointment with a Paediatrician left us a little more worried and confused – he informed us Arlo's seizure wasn’t normal at all, and he was very concerned. Unable to provide a diagnosis, we left the hospital with more questions, and no answers.
At 5 months old, Arlo experienced another long, convulsive seizure, lasting over 30 minutes. Can you imagine how long 30 minutes can feel, when your child is having a seizure? At the hospital, Arlo needed high doses of ‘rescue medication’, and it took him far longer than normal to come around from this sedation. Families living with Dravet will quickly appreciate the very real fear that I experienced that day – that I could have lost my son to a seizure.
Over the next couple of years, Arlo’s seizures continued to worsen. We began to notice his development falling behind others his age.
It was only at age 3 and a half years, because of a change in the diagnostic criteria required, we received Arlo’s diagnosis of Dravet syndrome.
It is hard to explain the feelings that come with a diagnosis of Dravet. Relief, as we finally could find answers. But you can also feel fear, as your world shifts, and settles into a new reality you never quite expected. It wasn’t long before I found Dravet Syndrome UK, joined the forums, and started talking to others.
Dravet Syndrome UK provided a lifeline for us at that challenging stage – a rare resource that helped prepare us for Arlo’s journey.
Today, as chair of Dravet Syndrome UK, my focus has been on lifting the charity to new heights to help more and more people living with Dravet. Better connecting the families and carers leads to a stronger, communal sense of empowerment. With the combined help of every voice on our Facebook group, we aim to support the Dravet community from within, as each individual undertakes their unique Dravet journey.
Every family that contacts Dravet Syndrome UK receives a welcome pack with a Dravet Syndrome booklet, a DVD with other families’ stories, and application forms for equipment and grants that they may be eligible for – all precious, vital knowledge for those new to the world of Dravet.
One of the very first things we did as a family living with Dravet was attend Dravet Syndrome UK’s annual trip to Center Parcs and what an eye-opener it was! We spoke to so many other families, and learnt so much from everyone there. Arlo had a seizure while playing in the ball pit, but instead of the usual chaos, everyone calmly offered help, which was a refreshing change from the normal run of events having a seizure in a public place.
Because of Dravet Syndrome UK, we quickly made friends with other Dravet families that lived near us.
Our lives continued to be touched by Dravet in ways we could never have anticipated. Later that year, my friend’s young daughter passed away from SUDEP (sudden unexpected death in epilepsy). The daunting reality is, SUDEP is not uncommon. Seeing my friend in this situation really drove me to get involved with Dravet Syndrome UK, and do all that I could to help.
Beginning as a trustee, there were roughly 170 families connected through Dravet Syndrome UK. Now, there are over 500 – our community is growing, and so is our advocacy.
As a small charity, Dravet Syndrome UK makes a lot of noise, and we haven’t stopped yet. We know that knowledge really is power. We are increasing our scientific involvement by raising our conference attendance, and funding more research and larger research projects, to improve diagnosis and understanding of Dravet syndrome. We are proud to be part of the Dravet Syndrome European Foundation (DSEF), helping to raise awareness and act as a voice for the Dravet community on a larger scale.
We continue to organise meet-up events through the year, and we are proud to arrange events for siblings of children with Dravet syndrome. These children are very deserving of special events, as they can often grow up overshadowed by family life living with childhood epilepsy.
Dravet Syndrome UK is really important to support families affected by Dravet. Charities can be a lifeline for families affected by Dravet syndrome, so please help to support your local Dravet charity, or reach out to them for support if you are affected by Dravet syndrome.
If you live in the UK, please visit our website to find out more about the work Dravet Syndrome UK does, or visit the DSEF website to find your local charity elsewhere in Europe.