By Bella’s mum, Katie
My family has been supported by Sebastian’s Action Trust for the past six years. My daughter, Bella, is 7 years old. She was born in 2018 and, within her first few hours of life, began having seizures. Bella has a rare gene variation that classifies her life as ‘life-limiting,’ and due to her severe epilepsy, her condition is also considered ‘life-threatening.’ Bella is nonverbal, a wheelchair user, and faces various medical challenges.
Despite these hurdles, Bella lives life to the fullest. You should see her face light up when the car pulls up outside Bluebells! The sheer delight she shows when she sees her Bluebells swimming bag attached to her wheelchair is heart-warming. Swimming in regular pools is not an option for Bella; she needs warmth, protection from germs, and a hoist for safe entry and exit. Thankfully, all of this is available at the incredible Bluebells facility.
The staff at Bluebells, including house manager Laura, make us feel welcomed and create a home-like, non-medical environment. The hydrotherapy pool sessions, sleepovers and coffee mornings provide us with a much-needed distraction from our hectic medical life, where we often have three to four hospital appointments a week. This facility allows Bella to simply be a child, and it gives me the space to be her loving mum.
When Bella was a baby, she suffered from severe pain due to uncontrollable acid reflux and painful muscle spasms. The only place I felt brave enough to take her was Bluebells. There, I didn’t feel judgment or pity; I felt support and overwhelming kindness. Without this facility, I fear my own mental health would have suffered, impacting my ability to advocate for Bella.
While we navigate the challenges that come with Bella’s condition, there is a grief for the life we once hoped for. Yet, despite that grief, we strive to enjoy life as best we can. Bella absolutely loves the sensory room at Bluebells, where she can watch twinkling lights, and she thrives in the music room, enjoying the sounds of bells and the piano. But most of all, she adores the cinema room, where she can watch Peppa Pig on the big screen!
Navigating life with three children, one of whom requires a wheelchair, presents unique challenges. It often feels overwhelming to manage a double buggy and a wheelchair, making outings a daunting task. On days when it feels impossible to venture out, the Bluebells facility is often the only place I can go. I am incredibly grateful for this sanctuary that allows us to escape the confines of our home and enjoy precious moments together as a family. It provides a safe and welcoming environment where I can focus on Bella’s needs without the stress of everyday life.
The community that Sebastian’s Action Trust fosters has been a vital part of my support network. Meeting other families who share similar experiences has been a lifeline. When you have a disabled child, it can often feel like you’re alone in your struggles. However, attending events supported by the Trust has opened my eyes to the fact that there is an army of individuals just like us, ready to support one another. This sense of community has been incredibly reassuring, reminding me that we are not alone in this journey.
Sebastian’s Action Trust, is making a real difference in the lives of families like mine. Their passion and energy as a charity are unparalleled, and we are incredibly grateful for Their support. The Bluebells facility has given us a space to create precious memories and experiences that we wouldn’t have otherwise. The impact of the staff and volunteers is tangible in our complicated medical world.
As we look to the future, we would be very grateful if you would consider supporting Sebastian’s Action Trust, whether by giving a donation, playing our lottery, fundraising for us, volunteering your time and skills or leaving a gift in your will. Every effort, no matter how small, helps ensure that families like mine continue to receive the vital support they need. Together, we can make a lasting difference in the lives of children and their families facing similar challenges.