By Christopher’s mum, Jade
We first heard about Sebastian’s Action Trust from our health visitor when Christopher was about three months old. By that point, our journey had already been incredibly challenging. Christopher had been diagnosed with a very rare genetic disorder called STXBP1 which causes epilepsy, he had spent the first three months of his life in hospital while doctors worked to bring his seizures under control with medication. Those early months were filled with uncertainty, fear, and long days by his hospital bedside.
When we were finally able to bring Christopher home, it felt like the first small step toward finding some normality as a family. During one of our visits, our health visitor told us about the amazing facilities and support that Sebastian’s Action Trust provides for families with seriously ill children. For the first time, we felt there might be a place that truly understood the challenges families like ours face.
After hearing about the support they offer, we knew we wanted to be part of it, and we quickly asked our wonderful community care nurse to complete a referral for us.
We visit Bluebells on Mondays for the sensory group, and it has become such a special part of our routine. We also join the coffee mornings, and we absolutely love spending time in the hydro pool. It’s a place where Christopher can relax and enjoy himself.
Mummy especially loves the chill and chat evenings — a chance to have a proper catch-up with other parents without a little person on my hip for a change. Those moments of connection mean so much.
Whenever I talk about Bluebells, I always describe it as our safe space. It’s somewhere we don’t have to hide, explain ourselves, or worry about anything at all. We can simply be ourselves, surrounded by people who understand.
It’s very hard to pick a favourite, but I especially love how much space there is, particularly the gardens. We joined in October, so we’re really looking forward to being able to spend more time enjoying the outdoor space when the warmer weather returns.
During the Christmas period, we were really looking forward to attending the 4 Kingdoms Christmas Light Walk event. Sadly, Christopher was very poorly at the time, so we were unfortunately unable to go.
When I later heard the story behind the Christmas in July celebration, it made me feel very emotional. It’s such a special idea, and we are really looking forward to being able to join in this year.
Recently I attended the Music Bingo fundraising event, and it was so much fun! I loved that I could bring my mum along and spend some quality time together while also helping to raise money for SAT. It was such a lovely evening and a great way to support this amazing charity.
SAT events feel very different from public events or regular days out because everything is planned so carefully with our children and their families’ needs in mind. The amazing staff think about every detail and truly understand the needs of the children, which makes such a difference. At public events you can often feel worried about how things will work, whether facilities will be suitable, or if your child’s needs will be understood. At SAT events, that worry just isn’t there. Everything is set up to be accessible, supportive, and welcoming, which means families can relax and simply enjoy the experience together. It creates an environment where everyone feels included, understood, and supported, and that makes the whole experience so special.
We haven’t had a favourite memory yet and are hoping to create more as we become more involved in bigger events.
From the house manager, the family support workers, counsellor, and all the volunteers in between, everyone is incredibly supportive. I really feel that everyone genuinely cares about every family who walks through the doors.
Our family support worker, Helen, is always checking in on us, which means so much. One moment that really stayed with me was when Christopher was in intensive care. When Helen found out, she was ready to jump straight in her car and come to the hospital just to give us a hug. I was completely blown away by that level of kindness and support. It showed us that the care given goes far beyond the events and activities — everyone truly cares about the families they support.
Separate to Christopher’s journey, I am also a butterfly mum to our beautiful daughter Daisy, who very sadly passed away in May 2024. Living with that loss is incredibly hard, and it can be difficult to find people who truly understand the depth of that raw emotion.
The support from the butterfly mum groups has been beyond incredible. Being surrounded by other mums who understand that kind of loss means so much and makes you feel far less alone. I first met the other mums at a sleepover arranged by Bluebells. We spent the evening doing diamond art, chatting, and getting to know one another. It was such a lovely, comforting evening and the start of some very special connections.