Wear Purple for Epilepsy Day – Nino’s story
Sunday 26 March is Wear Purple for Epilepsy Day, which provides a striking reminder of how this difficult condition impacts sufferers and their families. Epilepsy is a complex condition that affects the brain, causing seizures that happen suddenly without warning. It can start at any age and there are many different types.
For one Surrey family, the Fordhams, this awareness day has a special significance as their youngest son Nino, aged three, one of our patients, was diagnosed with the condition in May last year.
Eve and Chris were on holiday in the United Arab Emirates together with their children Franky, 10, and India, six, when Nino suffered a severe seizure for the first time.
He was rushed into hospital in Abu Dhabi and spent three days in the intensive care unit, where a consultant paediatrician diagnosed epilepsy.
After returning home, Nino was referred to Royal Surrey and is now under the care of the Children’s Epilepsy Team.
Mum Eve said: “Nino’s epilepsy is very severe and although he is now on epilepsy medication, it can’t always prevent seizures and is difficult to get right, so it’s stressful.
I try to explain the severity of it to people and I think this sums it up - every morning we go into his room I’m thankful that he’s still with us.
“This Christmas Nino had a severe seizure, which lasted for 90 minutes and was very frightening. I found him in his cot that morning struggling to breathe.
“He was blue-lighted into Royal Surrey by ambulance, then transferred to King’s College Hospital in London and spent three days in intensive care there.
“It’s obviously a worrying situation, but the Children’s Epilepsy Team at Royal Surrey have really helped us. I can’t praise the specialist nurses Stephanie and Natalie enough, they are absolutely brilliant. Together with the consultants, they’re exceptional in their support and so encouraging.
“I know that I can phone or email them with worries or questions and they’ll get back to me really quickly.
“With help and advice from Stephanie and Natalie, we’ve worked hard to educate ourselves about epilepsy, which is a way of coping with the stress better. It also helps that after his seizures are over and he’s recovered, Nino is quickly back to being the very best version of himself.
“Finding out Nino has epilepsy has been tough to deal with because he has a number of other diagnoses as well, including non-verbal autism and global developmental delay.
“But although having a label for your child is hard, it can also bring monumental support and support equals help and reassurance and it gives you the understanding to be able to achieve more. Education is power!
“We’re so thankful for the love of family and friends and all the remarkable care of the doctors, nurses and therapists give us.
“Nino is surrounded by love and has everything he needs. Although we will always have to pave his path through life, we are determined to live the very best version of the life we have been given.”