Liam who lives with Dravet Syndrome, Mum Clare, Dad Liam and Sister Cara, live in Northern Ireland. Clare shares their story.
Liam was born at full term, a very ‘normal’ pregnancy and delivery, he had no health concerns and all was going very ‘normally’. One Sunday morning when he was five months old, he had just had his morning bottle and we were sitting upstairs in our bedroom starting to get ready for the day. My husband noticed Liam’s left eye and eyelid was twitching. His mouth then started twitching and the whole left side of body was twitching and jerking. I remember the sheer panic - we both didn’t know what was happening.
We called an ambulance. The seizure lasted about 30 minutes and it just stopped as we got to the hospital. We were in complete shock. When the seizure stopped, his face was drooping on the one side, it looked like he had had a stroke. The doctors told us it was most likely a febrile convulsion.
They carried out a range of blood tests, urine tests and a lumbar puncture. All the tests came back clear and we got sent home. We did get a call a few days later to come back for some training in rescue medicine and were given rescue medicine in case it was ever to happen again. An MRI was also arranged and it came back clear.
Three weeks later, when I was at work, I got a phone call from Liam’s nursery to say he was having a seizure and an ambulance was on its way. Although rescue medicine was administered, the seizure still lasted 40 minutes. We were lucky that the nursery staff took a video of the seizure and we were able to show medical staff. It was after this seizure that we started on our first antiepileptic medicine.
Getting a diagnosis
Another few weeks later, Liam had another seizure, this time a tonic-clonic.
It was after this that our Consultant said he thought Liam might have Dravet Syndrome. He told us that it would require a genetic blood test and EEGs to further confirm it. He also told us not to google it, that he would explain it more to us if it did turn out to be Dravet Syndrome. Of course, the first thing I did was google it. It was a hard read.
The blood test for genetic testing wasn’t done for another few months and in between times he had his first medically induced coma to stop a prolonged seizure with a stay in paediatric intensive care.
Liam has been in hospital so many times now we have lost count. We have called well over 30 ambulances in the last five years, and he had his latest PICU admission there on his 5th birthday, which was his 8th time admission to PICU. We are still getting status seizures and recently the seizures have been happening during the night. We have gone through so many different medicines to help control the seizures. He is currently on four anti-epileptic medications. We just haven’t managed to find the right drug combination for him yet.
Connecting with other parents affected by Dravet Syndrome
When we got the diagnosis, I joined the Dravet Syndrome UK private group on Facebook. We didn’t know anyone with this syndrome, we had never heard of it. Everyone on the group was so friendly. Through the group I’ve met another Dravet mum who lives locally, and our families have met. It’s so nice to have someone who really understands what it’s like.
It is great for our other children too. They now have a new friend to connect with for life, who understands what it’s like to have a sibling with Dravet Syndrome. I am so thankful to have that support, where you can just send off a text and say how bad or how good your day is going and they completely understand, they have been there.
I could write a book on practical tips from my own experience, but I think at the beginning when you are newly diagnosed with Dravet Syndrome, it’s just so overwhelming. I know I didn’t know where to turn to. I would like to tell families that they are not alone, this is overwhelming, this is hard, but please reach out to people. You will learn to adapt to your new ‘normal’.
How our lives have changed
As well as seizures, Liam has problems with mobility, speech, eating and sleeping and he requires 2:1 care. I made the decision to leave my job and become Liam’s full-time carer. This was a difficult decision for me as I was so career focused.
We were told it would be better if Liam wasn’t in a children’s day nursery to build up his immune system as his main seizure trigger would be sickness. I didn’t want to be stuck at home all day and live in fear of seizures, so I then took him to any children’s stay and play session or local songs and rhymes sessions that I could. I still wanted him to get the same experiences as most children and still have some interaction. It was great going to these places, Liam loved them, and I enjoyed the craic too.
We still grieve for the child that might have been. It’s hard not to compare Liam to children of a similar age and get upset. He won’t play in a hurling match like his daddy. Liam’s balance and mobility are not the best, but we have taken him to horse riding for the disabled and soft play centres. We are proud of ourselves for doing these things. It is really stressful, but we try to do different things.
There are definitely times when we have thought that Liam might not make it. It is hard to pull yourself out of the dark thoughts, but my husband and I look after each other and make sure that other one is okay.
How we have overcome some of the challenges we face
There were no sporting clubs we were able to take Liam to in our area. Everything was too busy for him and not age appropriate. So, my husband and his friend decided to set up a Special Olympics Club called Oakleaf Lions. This club is run on a Saturday and is for children with learning disabilities. Our daughter takes part too by helping the volunteers set up for the sessions. It is great that Liam can now partake in something too and we can do things as a family.
We all try to fit in some sport or fitness into our day. I attend yoga, my husband plays hurling, and we have Liam’s sister, Cara, at as many clubs as possible. We find the exercise helps to cope with the additional stress levels.
At the beginning when Liam was having his first few seizures and we were under immense stress, our daughter Cara was only two years old. We were both going off in an ambulance with Liam whilst she was getting shipped off to a family members house. It was scary for her not knowing what was going on. Now we have carers that come into our home to give me some respite and I try to take that time to have one on one time with her, to make her feel special too.
Myself and my husband have both been to see a counsellor, which has really helped.
Family members have been so great helping out. They are always offering to take Cara for us, take her to the cinema or for sleepovers when Liam is in hospital. We couldn’t manage without the support unit we have.
A happy little boy who adores his sister
Liam is such a happy boy. He loves to play with his small figurines and line them up. He loves listening to songs on Alexa and although he doesn’t say many words or sentences, he can say “Alexa, do a fart”, which he finds hilarious and so do the rest of us. He is really affectionate and will happily walk up to anyone, say “hello” and give them a hug. Liam loves attending school, going to the park, and going down the slide.
What makes us smile the most is the love he has for his sister. He is so happy when he collects her from school. He sits in his wheelchair buggy shouting her name so loudly, screaming with excitement. It makes us so happy to watch.
Belfast Telegraph Coverage
Liam's family took part in a Dravet Syndrome awareness raising campaign in 2022 and appeared on the front page of the Belfast Telegraph. You can read their article here.
Every Dravet Syndrome journey is unique. Read more stories here.
Sport Northern Ireland Film
Liam's Dad recorded his experience with Sport Northern Ireland for Mental Health Awareness Week 2020. You can watch the film here.