Our Coeliac Story by Leanne Camilleri, YWCG Volunteer
The Young Wolverhampton Coeliac Group (YWCG) is a voluntary group set up and run by volunteers to support children with coeliac disease and their families. What is Coeliac disease you might ask? Coeliac disease is an auto-immune condition where the immune system attacks its healthy tissues when gluten is consumed. This damages the gut (small intestine) so the body cannot properly take in nutrients. The NHS suggests it affects at least 1 in every 100 people, but it is believed to be under or even misdiagnosed. As a group, we do not offer medical advice, we focus on mental wellbeing, we are here to provide peer support for parents and allow the children to meet other children (over a cupcake or two) who are dealing with the same issues as themselves, so they know they are not alone. Although our group is under the umbrella group of Coeliac UK, a nationwide charity, we are run as an independent community support group and we receive no funding to help with our events.
Free-From Events
Our group gets together approximately 6 times a year, to run children-themed events where the children can eat, drink and play without fear of contamination. Some of the events include our Halloween Scare and Share, Easter Eggs-travaganza and the Coeliac Awareness Week Walk, which is a lovely joint event that is run for both the children and adult groups. Although we are based in Wolverhampton as the only group dedicated to children in the country, we have families that travel from far and wide to attend our gatherings.
Image: YWCG Volunteers Sally, Kerry and Leanne alongside Natalie Yerlett a Paediatric Dietician who works in Great Ormond Street Hospital at the Popcorn and Movie event (January 2024)
The children’s group was initially set up by the late Janet Foster and the grandmother of a child with coeliac disease. Janet was asked to take part in a blog for Dietary Specials (now Warburtons) and was offered the sum of £250 to take part. However, Janet asked that the money be used to set up a children’s group. The first event was held in July 2005 and was a picnic during which over £550 was raised to help provide future activities.
Making a positive impact but a continuous financial loss
Through the years, the group has had its highs and lows concerning attendance levels, donations and volunteers to help run it. In 2018, I joined forces with Sally (who started attending with her children in 2009) to resurrect the group. We enjoyed watching the children eating from a buffet where it was OK to eat EVERYTHING! And we had great fun coming up with activity ideas to keep everyone entertained throughout the meeting the families shared ideas, tips and worries. To help low-income families we only asked for a voluntary donation, but this did not even cover the cost of the room, therefore the shortfall was always met by Sally and myself.
Then the pandemic hit, and we had to pause all in-person meet-ups so as not to put any children or their families at risk of catching the virus at one of our events. We therefore mainly did online events such as afternoon tea, and pizza making to name but a few and in the later stages, we met at playgrounds and parks for picnics.
The Difference NICS Wellbeing Is Making
In 2023, we resumed our in-person meet-ups with a poorly attended Easter event which saw the formation of our new committee. Our small team of two became three when Kerry joined us. She has been instrumental in increasing the number of families attending by giving us a wonderful social media presence.
“This time last year we launched the Young Wolverhampton Coeliac Group with an Easter event. 2023 saw the event with 7 children compared to 2024 with over 20 children” – Kerry, Volunteer
It was very important to us that we did not exclude families by charging a high admission fee but as you can imagine these events can be quite costly to put on, not to mention the extremely high cost of a suitable venue, which meant that our events continued to always run at a loss. This is where NICS Wellbeing swooped into the rescue. Sabrina has not only provided us with a wonderful venue, but she has put us in touch with others who have donated their time, money and resources to enable us to continue to make sure our events are not only sustainable for the future but also more affordable to the families that come to our event for support.
Image: Kerry, Santa and Elf Sabrina supporting the Young Wolverhampton Coeliac Group Christmas party 2023 at Woodfield Social and Sports Club
Our last event was to celebrate Popcorn Day. While the children watched a film on the big screen, the adults were given a talk followed by a Q&A session by the very lovely Natalie Yerlett a Paediatric Dietician who works in Great Ormond Street Hospital. The event was well attended, and everyone had a wonderful time and with the money raised, we were able to buy great resources to use again and again. Of course, the ever-thoughtful Sabrina popped in to make sure everything was going well, despite it being her son’s birthday.
We owe a great deal to NICS Wellbeing and the kind committee at Woodfield Social and Sports Club for giving our group a new lease on life and providing us with a wonderful new home for our families to come together.
Creating Conversations
As we embark on this journey to promote mental health and wellbeing for individuals with additional needs, we invite you, our community, to reflect and comment on the following question:
How can you collaborate with NICS Wellbeing Team to contribute to a more inclusive and supportive community that prioritises the mental health and wellbeing of those facing diverse challenges?
At NICS Wellbeing we believe that every voice matters in creating positive change. Share your thoughts, experiences, and ideas in the comments below, and let’s spark a conversation that goes beyond limitations, raising awareness and fostering a community dedicated to the mental health and wellbeing of all. Together, we can break barriers and create a more compassionate and inclusive world.