Forth Valley T1D Families Group volunteers: Left Leanne Browne (Secretary), middle Julie Catlin (Chair) and right Jillian Muir (Treasurer)
"The group are my extended family. I care about every single person and I want the best for them, and if I can help in any way, I will"
Meet our Volunteer Spotlight for February 2021, Forth Valley T1D Families
When Julie’s son Harris was diagnosed with type 1 diabetes at the age of 4, she and her husband felt isolated without family close by to help and not knowing any other families with a child with type 1 in their area. Julie found comfort in connecting with families on diabetes Facebook groups.
Three years ago, Julie decided she wanted to start up a group. She contacted the Forth Valley Paediatric team and Diabetes Scotland. Both were very supportive. Julie set up a Facebook Group, but wasn’t sure what to do next. Diabetes Scotland suggested advertising for other volunteers to support Julie with the group and helped her to run a start-up event where the group committee was formed. From that initial meeting, the group really took off. They started fundraising, and organising free events for children with type 1 and their families. Before the group, the committee had never met each other, but have now become close friends.
The group arranges an event every month for the children. In the past, events have included trampolining, laser tag, a visit to a ceramics café, a teddy bears picnic and a pantomime in December 2019.
“The children can just be kids for a few hours and have fun. They’ve all got type 1 diabetes so they’re not the odd one out, they don’t get any special treatment. Friendships are formed and families keep in touch. Diabetes affects the whole family so it’s important that siblings can come too. While the children are doing the activities, the parents have a chance to chat.”
The group have also arranged things to do for teenagers, such as segwaying.
“They arrive gruff and not making eye contact and leave with smiles on their faces, exchanging phone numbers! These events are lots of work to organise, and the committee all have jobs, but we don’t mind. We’re all friends, we’re enthusiastic and we help each other out. We’ve all got different strengths that we bring. We’ve all got issues we’re trying to cope with. The group are my extended family. I care about every single person and I want the best for them and, if I can help in anyway, I will. It started as just an idea, and then you see the benefits. I enjoy it, it’s not a chore. But I couldn’t do it without my wonderful committee, every one of them is awesome.”
A community of support
“There’s always one of us online for help and support at any time of day or night” says Julie. “It could be 3am and there’ll be 2 or 3 people up treating hypos at the same time! In childhood, so many things can change blood sugar level, it’s so unpredictable. A child could be sitting in front of a computer one minute and be bouncing on a trampoline the next. It’s hard to understand if you don’t have a child with diabetes I think. We don’t give any medical advice, we’d always refer to the diabetes team or children’s ward. We do draw on our own experience though and let them know they’re not on their own and things will get better. We’re there to provide a boost if anyone needs it at that moment.”
Julie’s son Harris is now 11 and he’s always happy to talk about his experience. From the first meetings of the group, he was showing his insulin pump and supporting other children. Harris jointly won an Inspire Award last year for his support and encouragement of others.
Support packs for newly diagnosed families
In 2020, the committee wanted to do something for children and families newly diagnosed during the pandemic. They had the idea to put support packs together that could be given out by the local hospital.
They tied it in with Diabetes Awareness Month in November. Due to social distancing rules, the group wrapped up warm and put the kits together outside in groups of two. It was chilly but they cracked on and got them done! They sent 50 packs to the hospital and newly diagnosed families have started to receive them.
“It can be a really tough time when you’re adjusting to daily testing and injecting. We wanted to do anything we could to make it a bit easier for the families. We put our heads together and thought about what would have benefited us when our kids were newly diagnosed."
"We thought about practical stuff at the beginning; hypo treatments like jelly babies, travel scales and medi alert bracelets. We spoke to the children to see what they thought and they decided they would like stickers to put on their Freestyle Libres so stickers went in the packs.”
The group also put together a card with messages of moral support for the families to let them know that they’re not alone. They included information about the group in case anyone wanted to join.
Included in the card were encouraging messages from the children in the group, little ones up to age 17, all who live with diabetes and are positive about it.
All this was made possible through donations from the local community. The group received a sizable donation from a local stage school that one of the girls in the group attends and a friend of Julie’s hand-made some face masks and sold them, with all the profits going to the group.
Their help for families during the pandemic is an ongoing project and the group will continue making packs as they get given out.
Recent activities and what’s next for the group?
The group have continued to run monthly events online through the pandemic. They’ve arranged scavenger hunts and quizzes, a virtual escape room and coffee mornings and catch ups for the adults. At Christmas, they ran a design your own elf competition, a Christmas jumper coffee morning and even managed to watch a panto online. At their Christmas event, one of the committee dressed as Santa and delivered gifts right up to the children’s front doors as a surprise whilst they were on a Zoom!
Julie and the group can’t wait until they can start running events in person again. Until then, they’ll continue to run their online events, and they’re hoping for some snow so they can hold a competition for who can build the best snowman!
If you'd like to find out more about online activities and support available, take a look at what's happening in your area.