Riley

Riley was born in 2004 and had his first seizure when he was seven months old. Three years later, he was diagnosed with Dravet Syndrome. Today, he's a teenager, going through transition from child to adult services.

Riley's parents, Derek and Meeley, first shared Riley's story when he was 11 years. To hear about their early Dravet Journey, please watch the video below. 

Riley is now 16 years old and in transition from child to adult care. Recently, we caught up with Derek for an update on how Riley was doing and their plans for the future.

“Ahh, the last years have flown by”, said Derek. “Riley’s as tall as me now, and taller than Mum. We’re aiming to get him into David Lewis College after next year (2022). We're just hoping we get a good social worker and the funding to facilitate this; here goes another battle. Alongside this, Riley will start seeing an adult neurologist after he turns 18”.

Knowing that it can take time to get the right kind of support in place, Derek and Meeley are also looking ahead to where Riley will live longer-term. “He’s a big lad, and we’d like him to access some independent living in the future as we get older, in readiness so as not to happen in a crisis situation. We all get old, so we need to plan now to make sure that Riley is used to living away from his family and being around other people, as hard as this sounds and difficult for us to come to terms with”.

Back to present day - Riley is doing well.  “After six years of swimming lessons, Riley can now swim to some degree”, said Derek. “Although I think he’s more likely water safe, he wouldn’t cope in the sea, but he can float and move about. I don’t think he ever got his hair wet once in all those years of lessons, so can keep his head above water!"

With regards to his learning disabilities, "Riley has Autistic Spectrum Disorder (ASD) to some degree. He copes well with structure, sameness and repetitive behaviours. We do encourage normalisation, which can sometimes be challenging. Riley is very affectionate though and quite gentle in nature, he loves hugs and giving hugs and can charm the birds from the trees. Riley comes to Dad and says ‘Solid’, that’s our relationship, and he says to Mum, ‘Riley loves Mummy to bits’ and gives hugs.

Riley likes flags and windmills, he spends lots of time in the summer down the allotment with Mum & Dad planting his flags and lights and having his dinner while Mum and Dad dig, weed and plant. 

He still loves his lights, whether they work or not. We have Christmas lights and music on all year round. Riley loves YouTube; Rick Steve’s Travels around the world and UK, we try to visit these places when on holiday with Riley and he loves this. Jeff not Geoff a family blog, Balamory the ceilidh episode; sometimes have to watch this 200 times a day. Mister Maker, Roly Mo, and lights and water feature videos”.

When it comes to seizures, the family have experienced the ups and downs familiar to many living with Dravet Syndrome. Riley’s continue to have temperature-related seizures with some complex seizure activity at night-time. 

“Riley doesn't have tonic clonic seizures, unless he’s spiking a really high temperature”, Derek observed. “Although he does have some quite strange complex partial seizures. These tend to exacerbate at night, a sign he’s outgrowing his medication dose, or like a breakthrough seizure during high states of arousal. Riley will wake with eyes like dinner plates and be very excited; hand flapping and lots of silly echolaic language, going to the toilet and up and down stairs, moving stuff around the house. This can go on for 5-6 hours sometimes until he’s burnt out and then he sleeps in and wakes like nothing has happened”.

Riley has also continued to be hospitalised many times. “This occurs almost every year”, noted Derek. In the past, he’s had pneumonia, chest infections and tonsillitis. On one occasion he got C diff from the antibiotics and this was a nightmare, Meely had to change him about 70 times in a night and he was very poorly. We never got a break on this occasion, it nearly broke us”.  Whilst Derek, Meeley and Riley came through this like many DSUK families they continue to fight to get the support they need.  

Recently the family applied for DSUK’s 16 plus grant, and have given Riley’s bedroom a makeover to make it more suitable for a young adult.

“Now we have a bedroom that will hopefully see Riley into his 30s”, said Derek.  “Riley loves it, there’s lots of sensory things; noisy and lights which entertain him, though he still moves them around the house and tries to decorate the living room and bathroom with his ‘toys’.

Accessing support from the DSUK community has been an important part of the family's journey.  "We’ve got a lot to thank DSUK for; all of the friends we’ve met, troubles and fun we share. All of the advice available on the website. The conferences where we meet people like us. The camaraderie is one as one".