In 2010, Sarah and Scott welcomed twin boys, Theo and Ollie, into their family. But from the beginning, it was clear that Theo wasn’t thriving in the same way as his brother. Diagnosed with ARCS Syndrome, a rare genetic condition, Theo faced significant challenges, including kidney and liver problems, movement difficulties, and deafness. His condition was life-limiting, and soon it became evident that the family wouldn’t be able to bring him home from the hospital with the same hopes they had for Ollie.
At a time when their hearts were heavy with the realisation that they didn’t have forever with Theo, Sarah and Scott were introduced to Jessie May. It was then that they made they were able to bring him home, knowing they would have the support they needed.
Jessie May helped the family create wonderful memories, amongst the challenges. The nurses not only assisted with Theo’s complex medical needs but gave Sarah and Scott the confidence to care for him at home. Sarah recalls, “There’s no way I could have done it without the Jessie May nurses. They showed me how to administer his medicine through the tube, how to do it safely, and gave me the confidence to give it a go. It was fantastic.”
But the support didn’t end with Theo. Ollie, his twin brother, was growing up in the shadow of his brother’s illness, and it was important for Sarah and Scott to give him a chance to experience the joy of being a baby. Jessie May gave them respite, allowing them to spend time with Ollie, to do simple things like go swimming or attend toddler groups – moments they would cherish forever.
Theo passed away when he was just nine months old. “One of the Jessie May nurses was at the hospital with us before he died, and their presence brought me a sense of relief,” Sarah recalls. “They provided comfort in such a heartbreaking moment.”
In honour of Theo, Sarah’s sister Lucy came up with a beautiful idea to walk in his memory, raising money for Jessie May. “I wanted to do more for Theo in some way; I felt that lots of people had been involved in getting him home so I thought we could replicate his journey home; walk around Bristol and then back to Winterbourne, back to his home.”
What started as a small walk soon became an annual tradition, a special day to celebrate Theo’s life and the journey they had been on as a family. In the first year, when Theo was just six months old, the walk took place just before Christmas and ended at Winterbourne, their home, where Theo and Ollie were waiting for them. Jessie May nurses joined them, ensuring that Theo was safe and well-cared for, and it was this support that allowed the family to make lasting memories.
“The Jessie May nurses were like angels,” Sarah says. “Theo was quite poorly by this point, but they made it possible for us to have that memory. They blended into the background making it as easy and relaxed as possible; they gave us the opportunity to create one of the most magical moments of our lives.”
The walk has continued every year. They wanted to create a day where Theo’s memory could be honoured, especially since Theo and Ollie shared a birthday. By dedicating this walk to Theo, they found a way to remember him while ensuring Ollie had his own special day.
“The walk is our way of remembering Theo and doing something positive in his name,” says Sarah. “It’s our way of keeping his memory alive and making sure that Ollie doesn’t miss out on any of his own moments, especially on his birthday.”
Through the years, the walk has grown into a cherished community event. Friends, family, and even strangers join in, trekking through Bristol in freezing temperatures, dressed in Christmas fancy dress, to show their support for the family and Jessie May. Along the way, local businesses contribute with food, water, and supplies, creating a sense of togetherness and shared love for Theo and his family.
As the years go on, Sarah and Scott are continually amazed at how the walk has continued, year after year. Sarah adds, “We’ve had all kinds of weather over the years – hail, snow, rain, and sometimes even sunshine, but no matter what, people come out to support us; they do it for Theo, but also for Jessie May because they understand how important this charity is to us.”
For Sarah and Scott, this walk has become more than just a charity event – it’s a way to honour Theo, share their grief, and find joy in the memories they’ve created, all with the support of Jessie May.
As Sarah puts it, “Jessie May gave us the opportunity to make memories. That’s something that money can’t buy.” The family has been able to treasure every precious moment with Theo, keeping his memory alive for years to come.
