Living with Dravet Syndrome - Charlotte's Story

We understand that living with Dravet syndrome is tough. 

Quite often, despite others making tremendous attempts to help and understand, only those living with the this catastrophic condition will ever truly grasp its full impact. 

Our charity is founded on the principle of supporting and connecting families. For this reason we provide a broad range of incentives including a dedicated and private online forum, grants for monitors and also a 16+ Adult Assistance grant to support Dravet children and parents as they make the transition into adulthood. 

We spoke to Julie Turner who is a single parent to Charlotte, aged 19 and living with Dravet syndrome, about her experience.

Charlotte was diagnosed with epilepsy aged 2. A diagnosis of Dravet syndrome was not given until she was 10 years old. With little information about the condition and an additional diagnosis of Chronic Inflammatory Demylienating Polyneuropathy (another very rare condition!) it was at this point, while desperately trying to find answers, that Julie discovered our Dravet Syndrome UK community. Julie said:

“The support I get from the group is fantastic. I no longer feel alone, and know that someone will know how I feel or have experienced what I am going through. I have now met other parents and know there is always someone I can vent to!

I was given a Summer Video monitor which is a true blessing, so I can monitor Charlotte while she sleeps (the majority of her seizures are now nocturnal). In 2014 Charlotte had bilateral pneumonia and was in hospital for 8 days. The monitoring system means that I feel a little more in control when everything seems to be going out of control.”

We have also been able to provide additional support through our 16+ Adult Assistance Grant, which was used to provide a double bed for Charlotte:

“The bed has two advantages - Charlotte is less likely to fall out during a seizure and I can sleep with her when she in unwell, instead of sleeping on the floor. The was especially useful this year as she contracted an E-coli infection leading to another rare illness! 

I was told to prepare for the worst - her bowel distended, her kidneys failed and she had septicaemia, pneumonia and liver infection. She fought like the battler she is, and amazed all of her doctors by recovering. When she was discharged, she was still unwell, so I slept in bed with her. It was during this time that the Dravet Syndrome UK community really got behind me. One of the other mom's (Alison Bone) was keeping in contact with me and updating everyone on Charlotte as I wasn't up to it.  Charlotte received so many get well cards and wishes that it was a real boost to both of us.

Charlotte now needs to have a VNS fitted. Again, the group has been a great source of information and I met with another mom (Joanne Golden) who went through her daughter's VNS surgery and reassured me that I was making the right decision.

Dravet is so rare that no one really understands what we go through as parents, other than another Dravet parent. For that, this group in wonderful. I would truly feel isolated without it. Thank you to all admin and parents for being there.”

Please help us to support other families like Julie’s if you can. We would not be able to do what we do without you and there are many ways to help including a one-off contribution, setting up a regular donation or holding your own fundraising event - you can find out more here https://www.dravet.org.uk/get-involved

Julie’s and Charlotte’s story is remarkable as with many of the stories we receive. We share as many as we can and you can send your own experiences to gary.j@dravet.org.uk