WF2017 Charity: Meningitis Now
Meningitis Now has a simple vision – to build a future where no-one in the UK loses their life to meningitis, and everyone affected gets the support they need to rebuild their lives. They fund research, raise awareness about the disease, provide a free 24 hour helpline, provide bereavement support and counselling and practical support for families affected by the disease.
Local Case Study – Hertfordshire
Jay contracted meningitis in 2004 when he was 16-months-old. 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. Meningitis Now has supported Jay and Sian over the years, helping to secure extra care for Jay’s 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.”
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. 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.”
Find out more about supporting Meningitis Now.