Landon

Our young family was constantly split up. We had to be everywhere all at once, whilst still trying to work and take care of our other son, Louis. It was our parents who held us together most days.  

Tests continued and eventually we were called into a meeting. Epilepsy was formally confirmed and medications were discussed, but there was something more to this; the consultant started to talk about triggers, rescue plans and then Dravet Syndrome entered our vocabulary.  

I started to spend a lot of time googling Dravet Syndrome, trying to convince myself that it couldn’t be that. We were given a fast-track genetic test and left to deal with the constant seizures, trying to get medicine into our baby boy and spending any other time we had, trying to research what was happening.  

Then one morning when Landon was six months old, the phone rang. We were asked to come into the hospital to discuss the results of the tests. Emma knew then and I perhaps should have known what we were going to be told. 

I sat holding Landon as our consultant confirmed the mutation to the gene and diagnosed him with Dravet Syndrome. He was the youngest she had ever diagnosed and in the moment it sounded like she was happy about that fact. But I realise now that in gaining an early diagnosis, she had made sure that Landon had the earliest help and had given him the best chance of minimising the risk of the wrong drugs, long seizures and poor developmental outcomes. 

I looked down at Landon as he slept in my arms and wished with everything that I had, that I could take this away from him.  

Daily Challenges 

Since the diagnosis, the challenges have come thick and fast – Dravet Syndrome is forever changing and what works one day, doesn’t always work the next.  

Medications seemed to begin to work and seizures for a while were manageable. But then, suddenly, just before Landon turned one, his seizures got worse. They moved from focal to tonic clonic. They became longer. The rescue medications lost effect and every time a seizure happened, we were back in hospital.

Each seizure is a panicked rollercoaster, with no known end time. After 30 minutes of Landon seizing  and doctors throwing everything at it, when it suddenly stops, you’re so relieved, but simultaneously trying to make sense of it all – the bleeping machines, the expressions on the faces of the staff, how terrified you really are. 

The increased level of seizures, coupled with the duration of them, led us to look into more  treatments and we were introduced to the Ketogenic diet. The diet has brought some challenges; it requires preparation in the form of batches of scientifically weighed recipes delivered from his grandmother, plenty of trial and error and the food covers everything from Landon to the dishwasher in a layer of grease that is difficult to remove. But it has made a positive impact; working in combination with Stiripentol, Clobazam and Sodium Valproate we have seen some extended seizure free periods. 

Having said that, we never feel totally at ease. Each time we feel like we are on top of things, Dravet Syndrome shifts, creates new seizure types, wakes him up at 2am and makes us wonder what it’s  going to bring today, but at the same time we fight back, learn, grow and evolve so that we can better deal with things.

His walking has improved but he gets tired quickly and we always must be next to him; he likes to  hold our hand anyway. He is non-verbal and whilst we have tried to help with some speech therapy, it has not happened for him yet. For someone that cannot speak, he manages to let you know what he wants and we remain hopeful that if we can keep seizures under control for him, he might pick up  some words. 

One of the few ways we have been able to keep any sense of normality is Emma going back to work, largely because her mum has been able to step in and be Landon’s carer when we need it. We know how lucky we are to have that support, especially when everything else around us felt like it was falling apart.

Support from Dravet Syndrome UK 

Dravet Syndrome UK was my first port of call to alleviate the fear I’d found from googling! The  website gave clear, hopeful advice based on science, making it clear that no two journeys are the same.  

The constant vigilance against seizures is one of the hardest parts of Dravet Syndrome and we are forever thankful for the oxygen monitor and portable finger monitor provided to us through the Seizure Monitor Fund. 

The private Facebook group for parents and carers has been a real help. It provides access to a  community of people going through similar things to us, allowing us a place to raise queries and  survey what works for others during some really hard moments.  

It has taken a while for us to come out of our shell and feel ready, but we plucked up the courage to attend the Dravet Syndrome UK parent/carer conference in 2025. It was a really good day and so inspiring to see people from so many professions in one room, alongside world-class carers and parents. I know that as Landon grows older, the experience shared by people that have been living  this for years, will make our journey that little bit easier and I am so thankful for that.

Landon is the cuddliest boy in the world. He wants to be next to you, hold your hand, show you things, take you places, sit you down and be with you. He loves routine, football, cricket and Miss Rachel. He has a special interest in garden centres and those mini kid trollies you get in Marks and Spencer.  

In Landon’s three short years he has had to endure more than I can comprehend. I’ve watched him tear off plasters, rip out NG tubes, try to take out his breathing tube whilst being intubated and supposed to be sedated, then fight off three nurses trying to take his bloods, and smiling at us whilst a fourth one has to be called in. 

After all he has been through, he somehow manages to make everything easier for you. Got to give  him three different medicines? No problem, he gulps them down. Waking up in the middle of the  night? He will keep you company while you watch the cricket.  

What I have learnt and would like to convey to anybody reading this having just had a diagnosis, is  difficult to articulate. But, in short, once we were diagnosed, Dravet Syndrome felt so big it was like the sun – I sometimes stared and looked at it for so long it blurred what was actually in front of us; Landon.  

But we have started to lean into it because it becomes your own story. Sometimes it has been too  much and sometimes it feels like we have got it nailed. Most days we are doing things I never would  have imagined we would be able to do when we received the diagnosis, yet we did, we do and we always will, for him.

I passionately believe that if Chuck Norris took a lunch box to school, it would be a Landon one, as he is an absolute hero.