Helping little boy with Dravet Syndrome – and his family

Axis’ Fleet Manager Taylor Burman applied to the Axis Foundation to acquire a specialist cot bed for his son Kaiden who suffers with Dravet Syndrome, a very rare and complex form of epilepsy.

Taylor told us: “We are always looking for ways on how keep Kaiden safe. He only sleeps about three hours a day and can be up all night. He needs monitoring systems constantly overnight. When we are at Demelza, he uses a specialist bed. It is electrically operated and has perspex panels and padding and is really great for him. So, I applied to the Foundation for help to buy something similar.”

The Trustees of the Axis Foundation were completely unanimous in their decision to support Taylor and his family and have made a donation of £11,000 to buy the bed.

Thanking the Foundation, Taylor said: “From the very day I started with Axis just under three years ago now, I’ve been supported by such a fantastic company. Axis is a company you want to stay with, there are no other companies like Axis, Axis is like a family, The Axis Family.

Taylor told us: “It was only two years ago, Kaiden caught Covid from hospital, at just one of his many visits, and due to his condition, we nearly lost him. It was extremely touch and go and unfortunately he had to be medically induced into coma. I remember ringing my manager at the time, David Crampton, and broke down in tears on the phone.

“The words and support I received from the board of directors, managers, colleagues and operatives were amazing. It was a tough time, but strangely that support helped us, helped Kaiden.

“I was later introduced to the Axis Foundation, constantly being told by [Foundation Founder, Axis CEO] John Hayes: ‘Taylor, the Foundation is your Foundation, use it.’

“I had always turned it down: my reasoning was, Axis does enough for me, and I wasn’t sure there is anything that could help Kaiden. I was WRONG!

“Kaiden started going to Demelza in Sittingbourne last year. We were extremely anxious about leaving him over night. He has no sense of danger at all. Our hospital consultants explained it like this: ‘If you put an item in fire, a normal person would keep away from the fire, but Kaiden would walk into the fire and sit in the fire to play with that item.’

“And because he also has epileptic seizures, it just wasn’t safe to have him in a normal bed. Demelza had a purpose-built specialist bed just for him, for children like him, something we have not seen or heard of. So I enquired with Demelza about the bed, the safety of the bed and most importantly, does Kaiden like it (he does!).

“When we were in the process of moving home, our wonderful [Foundation Trustee/Axis Divisional Finance Controller] Claire Pearce reached out to me asking if there is ANYTHING the Foundation could do for my family. The rest is history.

“My family and I would just like to thank the Foundation their support in providing the bed, it has taken a humongous amount of pressure off me and my wife. It’s very hard to put in words how thankful we are. Thank you!”

More about Kaiden

Kaiden, suffers with a disability called Dravet Syndrome, which is a rare and complex form of epilepsy. He requires 24/7 care at home and school and needs regular assistance at our charity partner Demelza’s hospice in Sittingbourne. Demelza’s home care team provide respite for the family too. including his sister Marla.

Because of related co-morbidities (including autism, mobility and sleep issues, low immunity and oxygen levels) and vulnerability to SUDEP (sudden unexplained death in epilepsy) Kaiden is also treated frequently at specialist hospitals including Evelina and Great Ormond Street as well as the family’s local hospital, Medway in Kent.

Up till now, he has slept in his parents’ room along  with all his vital equipment including Oxygen machine and bottles, medication, and seizure and oxygen monitoring systems.

As Kaiden, now five, grows and gets heavier it is increasingly hard to lift and carry him so the local council are re-homing the family to a larger home with hoists and lifts – and where he will have a room of his own.

And, thanks to the Axis Foundation, he now has a practical, safe cot too.