These are the stories of some of the families who have found support, connection and understanding with Sebastian’s Action Trust
We were fortunate to have a weekend at an apartment last year. We had a great time and enjoyed using all the facilities. The apartments were beautifully decorated, had lots of toys and books for the children to amuse themselves with. It was so peaceful and tranquil there and we thoroughly enjoyed our morning swims which set us up for the day ahead.
We have been lucky to have had support from the Family Support Workers and the House Manager over the years. From care packages and doorstep visits during the pandemic, to an extra pair of hands for the journey from home to The Bluebells when our son needed watching in the car, there’s always been someone available to help us.
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.
It takes a village to raise your children. Bluebells is my village, staff and parents. A village I couldn’t do without now. Bluebells takes the stress out of going out.
We attend as many SAT events as I can. Without Sebastian’s Action Trust we would miss out on a lot, as parties and events outside of the Trust are not suitable or accessible and Archie wouldn’t be able to take part.
George loves all the events put on by Bluebells. We try to attend as many as possible. They make it so our children can join in and enjoy being children and siblings can be with them. They just have everything in place to make the day fun and easy.
We speak to many of the SAT staff every week. Knowing there is always someone at the end of a phone or a message offering a shoulder to cry on or help with referring to other services or charities is such a huge comfort. If I ever need help with navigating something I am unsure of in the SEND world, they are always my first port of call.
My son Jesse was diagnosed at 2 days old with a complex heart condition. It’s hard to convey just how terrifying having a child with a serious illness can be. Fighting for their life, the waiting and the unknowing … It’s an exhausting and lonely place at times. you live in fight or flight mode most of the time and being hypervigilant long term can weigh heavy and I have since been diagnosed with PTSD.
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.
