By Fraya’s mum, Cassie
We were referred when Fraya was 18 months old. We needed support for all of our family because of how bad her seizures were. We were housebound and needed somewhere which could offer support for us all. We needed to meet others in the same position.
Fraya has Angelman’s syndrome and epilepsy. There are other charities for Fraya’s condition but their events cost hundreds, which we cannot afford. They have regional events and our nearest is in London, which is too far to go, and a three-day conference costs £400 to attend. SAT is our safe place. We are happy to contribute to things.
We visit once a week. It is a huge support. The kids love going there and enjoy all the events. We can’t go to normal events. Lacey enjoys the toys there as they are locked away in her bedroom at home, away from Fraya. I love the support as a mum. I can talk to others who understand and are in similar situations. I am surrounded by people that get it. I feel relaxed, happy, and can be my full self. I can breathe. I feel I can come and cry if I want to. I can just turn up and staff and other families help me in so many ways.
We attend all the SAT events because they are fun, accessible, and we are able to change Fraya easily. There is nowhere to safely or hygienically change elsewhere. It excludes us going to external events, which we don’t have to worry about here. If something happens, if Fraya has a seizure, we know there is help on hand to watch the other kids. We know who to call and where to go. We get a break from having to think about everything all the time as it is safe at Bluebells. We don’t have to keep an eye on siblings all the time. There is always someone around who is happy to help and spend time with us all. Siblings feel safe and confident here as they know Fraya and I are safe too.
It takes a village to raise your children. Bluebells is my village – staff and parents. A village I couldn’t do without now. We have to plan so much before we go anywhere else… parking, food, toilet. Bluebells takes the stress out of going out. I have friends now that understand what life is like.
We attended one sibling campout when she had just turned the right age. She is now happy to come here and stay — it’s not like that elsewhere. She feels safe here with safe people. Happier here than elsewhere. She doesn’t have to have parents around to have fun any more.
Everyone is amazing, doing the job and working over and above. It doesn’t feel like they are treating it like a job. They are part of families’ lives. People at SAT understand what we go through.