My daughter Johdi was 17 when she died on 5 October 2017.  (Centre in the picture)
 

She had febrile seizures as a baby, but after tests she was discharged from care without a diagnosis and went on to live a relatively normal fun life.
 

When she was sixteen, she had her first tonic-clonic seizure and we saw a neurologist.  After some tests, the diagnosis was JME (juvenile myoclonic epilepsy) and two weeks later she started on medication.  
 

We both had alarms on our phones to remind us of med time.  We were a great team.  Naively, because her seizures only seemed to occur between 1.30 am and 6.30 am, I always thought, “well at least she’s safe in bed”, but little did I know.  
 

Johdi was having two - four seizures most weeks.  There was only one six week period where she was seizure-free, but all through this she kept her beautiful smile and infectious laughter going.  
 

In August 2017, she had an episode of cluster seizures and didn’t recover  as she usually did and was taken to hospital.  Sadly, she was discharged with no follow-up or referral to the neurology team although I asked for this.  

Johdi started to train in childcare – she had always wanted to work with autistic children and had a placement at our local primary school.  Once her nerves disappeared, she became a valued and loved member of the tutor group.
 

The day before she died was my birthday and nineteen of us had gone out for a meal.  The last thing everyone said to Johdi was “I love you” and her to them and how lucky they all feel to have that memory of her. 

The next morning she had a seizure and went back to bed, but we found her a few hours later face down in her bedroom. My beautiful girl was dead.  
 

We were taken to hospital in the ambulance and the whole way I was stroking her face and kissing her forehead, all the time thinking, how has my girl just died for no reason? 
 

Then I was told about SUDEP for the first time at the hospital. They said we hadn’t been told before because they didn’t want to scare us and “Johdi wasn’t a high risk anyway”.  But we know now that Johdi’s tonic-clonic seizures and nocturnal seizures placed her at the highest risk.  
 

I started a legal claim, but it has taken until now for me to be ready to share it. The hospital trust accepted that there had been failure in Johdi’s dosage of epilepsy medication, failure to use the right type and dose of emergency rescue medication and failure to refer her to adult neurology services for follow-up.  

The case was painful but has settled. I have worked closely with the hospital since Johdi’s death to make the changes that I felt would have made a difference to her care.

In November 2020 I got a call to confirm that training of staff about SUDEP and systematic discussion of SUDEP risk with patients has now been implemented at the hospital, together with a clearer transition from child to adult care.  This was just amazing for me and makes me feel Johdi’s sad and preventable death has meaning.  

I want to continue my journey to positively influence change in my local area and nationally.  
I am working with SUDEP Action to do this and will do so in Johdi’s name.  
 

 

Tanya (Johdi's mum)

Global Conversation 2020