Carly & Charlie's Story

12 July 2023

I am Carly Jones, I am  a PSE and at the time of writing this, I have worked for Kent Police for 19 years. I remember joining the Staff benevolent fund at the very start of my service, it was just £2 a month and whilst I hoped I would never need to call upon its services, it was such a small outlay for that “just in case” scenario. To be honest I forgot about it, I didn’t really keep up to date with the sort of things they can help with, it was just something I kept at the back of my mind vaguely recollecting that they might be able to help me if something really bad happened to me or my family.

Some years later in 2018, when my son Charlie was 11 years old, he was diagnosed with juvenile epilepsy having had a seizure at primary school. Through medication the epilepsy was effectively managed and by 2022 we were all confident that he had simply grown out of it.

That was until late 2022 when out of nowhere he had a series of seizures. The seizures had not only returned but as we went into 2023 they had evolved into far more aggressive seizures that he could not get out of without medical intervention, all of which culminated in his admission by ambulance to Medway Hospital. We are still undergoing tests to try to establish why these seizures are happening.

The impact of this on Charlie, myself and all our family has been immense in the last 9 months. Now at 16 years old Charlie’s independence has completely been taken away from him. As his parents because most of his seizures occur overnight and because we couldn’t forgive ourselves for having missed the start of the last severe episode (we were using regular baby monitors to try to look out for the start of any seizures ) we took to sleeping on his bedroom floor and physically checking on him through the night. We live in constant fear of the dangers that come with the nature of the overnight seizures that Charlie suffers from.

Through a children’s support group we stumbled across a camera and monitoring system  designed specifically for those with Epilepsy. It uses sensors to detect the type of body movement indicative of the start of a seizure, if triggered it would alert by an alarm, it recorded the details of the seizures for the doctors to review, but importantly it also allowed the camera to be switched off for privacy but still maintained all its functions for monitoring of seizures. But it was quite expensive, and it was only available in America. We wanted it but we were having to prioritise and  it was always going to be at the bottom of the wish list behind paying ongoing consultant fees and for tests.  

But then through a chance catch up conversation (and breakdown) I had with a colleague she approached the benevolent fund on my behalf. She knew I would never have done so myself. I assumed even when I signed up 19 years ago they were a support function for other things, and that there were people far more deserving and I would never once have thought I could approach them about medical equipment or monitor support for families. But through the overwhelming kindness and generosity of the benevolent fund we were able to order this camera, something which is going to be life changing for all our family. We have had the monitor a few weeks now, and after a few days of constant alarms whilst the sensors were adjusting, it’s now all up and running and we’ve even been brave enough to turn off the camera and let system monitor my son completely giving him the privacy he so desperately needed. I’m actually getting some proper sleep myself.

Of course, I didn’t foresee any of this happening when I joined the Benevolent fund all those years ago. I pay £2 a month to be a member of the fund, I’m told its been £2 a month for staff members since 1996, it’s the best £2 a month I’ve ever spent. I would urge anyone who is not a member to join because no one knows what might happen to them or a family member in the future.