Jay became ill with a high temperature and lethargy, but it wasn’t until he started to have febrile convulsions that his mum Sian knew something was terribly wrong and he was rushed to hospital.
Jay did not have a rash until the third day of being in intensive care, and even then there were only a few spots on his feet. It is a common misconception that a rash is always present in meningitis, but this is not the case. A rash may develop during the latter stages of the illness, or not at all. The key message from the UK’s largest meningitis charity Meningitis Now is, ‘Don’t wait for a rash’.
Jay spent over a week in intensive care, and was then transferred to a high dependency unit. The youngster fought hard and won his battle against the life threatening disease, but unfortunately he lost his sight and was left brain damaged.
Now, 13 years on, Jay is a young man living with the after effects of meningitis. His mum Sian has been by his side, helping him to make sense of the world and taking on the role of his full time carer. She said, “I spent a long time being angry and upset, as this never should have happened to my beautiful boy.”
Instead of dwelling on her feelings of anger, Sian put her efforts into fundraising for Meningitis Now, holding a family fun day in 2014 and continuing to raise money ever since. She said, “I decided not to get angry, get even; from that day my boy and I have done just that and we kicked meningitis’ butt. We continue to do so every day; we have a lot of tough times but together we will always make it through.”
Meningitis Now has supported Jay and Sian over the years, helping to secure extra care for Jay’s needs, and providing counselling and alternative therapies for Jay and his family. Recently the charity has also funded a wheelchair for him, working with Demand, an engineering charity, to adapt the wheelchair to his specific needs. Sian said, “Meningitis Now has been a huge support to us over the last 13 years. They have supported me with counselling and vital information and have given Jay grants for equipment including a swing, a special needs trike and a touch screen computer.”
Jay and Sian face new challenges all the time, but together and with the support of Meningitis Now, they can look to the future with hope and optimism. Sian said, “He is a happy, lovely boy and he is progressing all the time. We were told he would never walk or talk again, but he has learnt to do both.”
The sad fact is that Jay will always be reliant on adult support for the rest of his life, and he will never be able to be independent. Sian tells us there are daily challenges that the whole family face together, she said, “He beat meningitis but it's still tough and a struggle for him. Jay is home full time as he couldn't cope at school so my job is 24/7 and sometimes it's tough. I have another little one who is 4 and I feel so guilty that he misses out on a lot of things.”
Throughout the tough times Sian has stayed positive, summing up their experience she said, “We make the best out of it, and Jay is still here - that's the main thing.”