dylanpoorly — Outgoing Dylan became seriously ill after seizures became life-threatening

The parents of an eight-year-old boy who is in King’s College Hospital after his epilepsy reached a life threatening level are now raising funds for two critical services which have supported their family.

Dylan Dawkins, from Minster, has lived with epilepsy since he was four years old. The outgoing youngster, who loves singing and performing, has medication for the condition but on Saturday, July 5 had to be taken to A&E when his seizures became longer and more frequent.

Parents Lianne and Tom took Dylan home on Monday but he ended up back in A&E.

Parents Tom and Lianne with Dylan on their wedding day

Lianne said: “Dylan was diagnosed with epilepsy when he was four. He was under a doctor at QEQM and then referred to the neuro tam at King’s. They were looking at the viability of brain surgery for a lesion that is suspected to be causing the seizures.

“He had lots of tests and electrodes to try and track the epilepsy activity.

“It wasn’t very nice as the electrodes are put on the brain, under the skull, and then they have to operate to take them off again.”

Surgery for the lesion was planned for July 11 but on Wednesday Dylan went into ‘status’—a life-threatening condition that required him to be placed on a ventilator.

Lianne said: “We ended up in A&E again and then he was in there being observed. We were talking about the surgery, it was planned for 11^th July, but this crisis happened the week before.

“We were arranging the hospital transport when Dylan suddenly went into a long seizure, he came out of it but then went into another long seizure, with constant seizures more than four are called clustering. They then determined he was in status and needed to intervene as his rescue meds were not working.

“The pathway means they try four different medications/interventions to get it under control. Ventilation, like in intensive care, and anaesthetic, which is like an induced coma, means while they are sleeping it gives the brain a rest.

“It is very traumatic for him and very disturbing for us as parents to watch.

“With Dylan’s epilepsy he is aware. He gets auras warning that the seizure is coming and he has said to me ‘ I do not know if I am going to be alive.’”

Dylan was taken to King’s by the South Thames Retrieval Service in its mobile critical care ambulance.

Lianne said: “It is literally an intensive care set up in a mobile unit, it’s amazing. Everyone knows about the air ambulance, and they are amazing too, but STRS gets the child where they need to be and is such a crucial team and well worth raising money for.”

Dylan was taken to the Paediatric Intensive Care Unit (PICU) at King’s.

Doctors have performed surgery to remove the lesion in his brain and the youngster has since moved out of PICU to the children’s Lion ward to be looked after by the specialist neuro team.

Dylan after surgery and with the ventilator now removed

Lianne, who runs care homes for young people with learning disabilities, said: “We are now trying to get Dylan well enough to come home but there is a bit to do yet. He is still being tube fed and they have to get the medication right for him. He has an infection and they are keeping his vitals going and he is sleeping virtually all day and night but he is recovering.

“The specialist neuro team at King’s and consultants see him daily and can make any changes needed so he is in the right place.”

Lianne and Tom, who works in Southeastern’s control centre, say a second crucial charity has helped them – the Ronald McDonald Houses.

The charity’s houses are based as close as possible to a specialist children’s hospitals across the UK. This means that families can be by their child’s bedside in a matter of moments, whilst maintaining a degree of normal life and reducing emotional and financial strain.

Lianne said: “Thank goodness for the Ronald McDonald House which is literally a 10 minute walk from the hospital. It really is a godsend, you don’t have to worry about accommodation or think about any of the logistics.

“It is really amazing to have that so you can come and go as you need to and have a safe place to stay with no late night travelling. It means one of us can always be at Dylan’s bedside.

“They are both amazing charities and we can’t thank them enough. That’s why we are raising the money for them, so other families can benefit in the future in the way we have.

“The donations and support we have had already have really been overwhelming so we can help these two crucial charities.”

Dylan is making progress and there is still a journey to recover. The St Faith’s pupil will need physio help to get mobile again but hopefully he will soon be back singing and performing with Elite Dance School.

Lianne said: He has just taken his singing grade two and he loves performing.

“He is also a very loyal and good friend, he looks after his friends and he is very sociable. Dylan loves to be the centre of attention at a party and likes his rugby and swimming.

“He really is a joy.”