Tate had his first seizure at just 7 weeks old. His parents, Paul and Jade, share their story.
As first-time parents, we were overjoyed when Tate was born and found the first few weeks of his life to be such an amazing, incredible experience.
When Tate was 7 weeks old, things changed very quickly. He had his first very prominent focal seizure, and we had a week-long hospital stay with testing and observations. At 8 weeks old, his immunisations triggered his first tonic clonic seizure which was absolutely terrifying.
The month that followed held daily seizures for Tate and the hospital quickly decided to do a genetic test. While we were waiting for the results of the genetic test, we did our own investigations and found Dravet Syndrome through Google.
While we thought Dravet Syndrome was likely, when Tate was just 6 months old, we were called into the clinic where we were sat down and the diagnosis of Dravet Syndrome was confirmed. Despite our previous research, nothing could prepare us for the news, which hit us very hard. Looking at our beautiful boy, knowing he had this devastating condition, really broke our hearts. It took a long time to sink in and while we were thankful for an early diagnosis, it was so hard to cope with.
Coping with Challenges
Tate had seizures daily for the first year and a half of his life. We were frequent visitors to A&E, whilst simultaneously trying to hold down busy full-time jobs. During those early days, Tate’s seizures were lasting for at least an hour and required rescue medication.
Seizures happened at any time of the day or night so we were always on high alert. We were absolutely exhausted, physically and emotionally – it was so horrific to watch Tate struggle so much, while trying ourselves to function on so little sleep.
Tate has been through a lot and has been in intensive care three times due to the severity of his seizures. We’ve tried all sorts of medication combinations. Stiripentol was administered when Tate was intubated for the first time, bringing his seizures down from over an hour, to one minute long. Since then we’ve had to move on and Tate is now on Fenfluramine, CBD Oil and Clobazam.
The last time Tate was on a ventilator was particularly difficult. He took a long time to come off the ventilator and lost the ability to do the things he used to do, like saying a few words he had learnt, like "Dad", some of the makaton signs he knew, making animal noises and playing with his favourite toys.
Support from Dravet Syndrome UK
Being a part of Dravet Syndrome UK really helps us to connect with others, share experiences and realise we are not alone. Everything we are going through, other families are too.
Through the Seizure Monitor Fund, we were granted a SATs monitor, which is brilliant in enabling us to keep an eye on Tate’s oxygen levels after a seizure. We have attended the Dravet Syndrome UK Conference for parent/carers and found it an amazing experience and would recommend to all.
This year, we’ve received the new Family Guide, which is amazing. It would have really helped us to have had something like this when we first started this journey as it can be daunting and very difficult to know where to go for help and what’s available to you. Like many newly diagnosed families, we had to investigate and find things out for ourselves at the start of Tate’s journey, which was extremely hard, but being a part of DSUK really helps with support and guidance.
Your life undoubtedly gets turned upside down by Dravet Syndrome and it can feel very isolating and scary. It’s continuous care, sleepless nights and watching your child go through so much that you wish you could take it all away. SUDEP (Sudden Unexpected Death in Epilepsy) is a constant worry, which has caused us to sleep with one eye open, all the time checking on him throughout the night. But on the flip side, we have built incredible connections with many people who we’ve met through the Dravet Syndrome UK online private parent/carer forum.
Reading more about Dravet Syndrome can be scary especially in the early days and there are some terrifying scenarios as we all know, but at the same time it’s a great comfort to have this information and support there. Every day is a worry, but the best advice we could give to other families would be to try and do as much as you can and enjoy the good days as best as you can.
We are lucky to have a wonderful hospital network on the ward and at A&E. The Young Children’s Trust has helped us a lot with staying over at Addenbrookes Hospital while Tate was in intensive care. Without their help we would have had nowhere to stay. Tate’s paediatrician, Nik, has been with us every step of the way and the effort he puts in to always be at hand, we wouldn’t be without.
The strongest person we know
As Tate gets older, we have seen him grow and he amazes us all the time. We do not know another person as strong as Tate, he is much stronger than we could ever be. For all he goes through he never cries, just bounces back with a smile - it really is quite astounding. After his seizures he can quite often be up and about with huge amounts of energy as if nothing happened, which amazes everyone.
As well as seizures, Tate has global development delay and he cannot walk or talk. He has begun to take a few steps in the house which has really brought a smile to our faces and we are ever hopeful that he will continue to learn, albeit at a slower pace than others. Even though he doesn’t talk, he is aware of what’s going on around him and is so very bossy in telling us what he wants! He has started at SEN school and he absolutely loves going there. His face lights up when we take him in the morning and he has such fun and gets extremely excited.
Tate really is the happiest, smiley and most amazing boy you will ever meet. He loves watching the same programmes over and over and his all-time favourite show is 'The Chase' in the evening! Tate loves to be on the go and out in the fresh air, being wheeled around trying to gain the attention of everyone we see. He will grab his shoes and medication bag as a sign to us that he wants to go out. Most of all he is so very affectionate, loves a cuddle and a big kiss.