“Family days built up a sense of community, that we were not alone - there was guidance, support, and always a bit of craic too.”
In 2014 Joanna and Chris’s 3-month-old daughter Sophia suddenly showed signs of meningitis. She was rushed to hospital where a lumbar puncture confirmed their worst fears.
Thankfully, Sophia recovered, though she has been left with significant after-effects.
The support of Meningitis Now has been a lifeline for Sophia’s parents. Joanna says:
“As soon as they knew Sophia would be discharged we were referred to Meningitis Now and the support worker came to our house. I remember arriving home from hospital feeling completely scared and alone and then we got a call asking if she could come out. She arrived and answered questions we didn't even know we had and we have kept links with Meningitis Now ever since.
Special sparkle
We last heard from the family in 2021. Despite challenges, Sophia was a Disney fan with her own special sparkle and sense of mischief. The family have continued to actively fundraise for Meningitis Now and Sophia is now a larger than life 11-year-old.
Mum Joanna says: “It's been almost 5 years since we first wrote “Sophia S's story” and our experience of meningitis. Lots has changed in that time - Sophia is now 11. She still loves Disney, but she also now loves make-up and wants her nose pierced.
“The impact of meningitis is still prevalent in our family life, however we redefined our narrative – yes. meningitis irreversibly impacted our family, but we have worked hard to ensure this no longer defines our family.
"Whilst the impact meningitis had on Sophia's brain and body have made many areas of her life so much more challenging than what they otherwise wise would have been, it has also given us a great community of friends and extended family and opened up our lives to so much love, joy and support.
Lifeline
“Meningitis Now makes up a part of that community - consistently over the 10 years since Sophia had meningitis we have had contact with the organisation, from the initial support worker who was more of a lifeline than she will ever know, to other support workers who have provided so much guidance, a listening ear, and helped us to process each stage of development.
“We have attended family events, received funding for Sophia's talker, access to counselling for myself, and have formed links with other families impacted by meningitis that support workers have connected us with.
“There is not one support offering that we value more than the other, because it took all of these things to get us where we are today.
“We have attended a number of family events over the 10 years and each one has brought us something different - I think this shows Meningitis Now events are for everyone, no matter what stage of processing the impact of meningitis you are at.
We weren’t alone
“Initially, family events were a source of solidarity - we weren't alone, we were not the only people that this had impacted, and also that we weren't alone in some of the fears and 'fights' we were experiencing.
“Family Days allowed us to meet with different staff members throughout the organisation and to hear and learn from their experiences and knowledge - again this built up a sense of community, that we were not alone - there was guidance, support, and always a bit of craic too.
“As we processed and came to terms with life after meningitis, Family Days then became a place to build relationships, friendships and a place that I could give back - I had knowledge and experience to share with others too!
Time of her life
“For Sophia's 10th birthday instead of a party and presents we held a fundraiser at a local park, we raised £1,745 for Meningitis Now and gave hundreds of signs and symptoms cards and Sophia had the time of her life.
“It’s so important to us as a family to give back to a charity who have given us so much support over the years. We hope the money raised will allow Meningitis Now to continue to support more families in Northern Ireland impacted by meningitis, families like ours.”
Our next Family Day is being held at Clip ‘n Climb, Belfast, the popular indoor climbing activity centre and escape rooms on 28 February, 10-3.30pm.
Chance to connect
The day offers a chance to connect with other families affected by meningitis and get involved with fun and exhilarating experiences.
Come along and join in with a morning of climbing challenges – providing fun and excitement, whilst also ensuring a safe, secure and accessible experience. Families will then have an opportunity to enter the escape rooms to test their problem-solving skills.
This event is free for families who have a personal experience of meningitis and have children up to 16 years old. It's a fantastic opportunity to give children the chance to be children and parents the chance to meet other families who understand how difficult life after meningitis can be.
Our support team will be on hand to offer support and share more about the ways Meningitis Now can support you.
Refreshments and lunch are provided, and the Clip ‘n Climb Centre is fully accessible for all abilities.
If you are interested in attending, please fill in the form on the Northern Ireland Family Day webpage on our website or email Community Support Officer, Jennifer Todd, JenniferT@meningitisnow.org.
We’ll be in touch after registrations close on 30 January 2026 to confirm your place.
