By Milo’s mum, Sophie
We were referred to SAT in 2021 by our Children’s Community Nurse after our son was diagnosed with Spinal Muscular Atrophy at 5 weeks old. He has an older sister, so knowing there was somewhere that would provide support for the whole family was really important to us.
When the children were younger we used to visit (The Bluebells) very often! As two of three are now at school we don’t have the opportunity to visit as frequently as we would like. However, with our new addition to the family (who is also a supported child) we now have the opportunity to visit more often for sensory sessions, coffee mornings and other get-togethers. We love visiting The Bluebells; it doesn’t matter if it’s just for an afternoon swim or for a week-long stay in one of the beautiful apartments, it always feels like we’ve had a decent break. The Bluebells is a home away from home, and more. The kids are always entertained, and having someone there to occupy them even just for half an hour with a craft or watching a movie gives us some much-needed downtime.
Honestly, we love it all. Having an accessible house, and activities at our fingertips is so lovely. Our son loves being able to get around everywhere, and having a pool where we can all swim together safely is a real bonus.
We have been lucky enough to have stayed at The Bluebells a number of times over the last five years. We have always stayed as a whole family, sometimes with my husband commuting to work during the day, and other times when he’s also had time off. It’s so convenient for us location-wise as we’re just down the road, but even so, it still feels like a little holiday! We all love being in the pool, and the kids love having access to so many different crafts. The updated garden is great for everyone to enjoy, with the equipment being accessible to all of us now. We love staying at The Bluebells and will always jump at the chance for a break there.
We try and come to all the ‘big’ events if we can. They’re always great days out, and we love being able to invite our extended families to attend and support the charity too.
Christmas in July and the Teddy Bear’s Picnic are particular favourites in our family. The kids really enjoy all the activities available, and the face painting is always a big hit.
We know there are people there who understand our family situation. No one bats an eyelid at a 5-year-old whizzing around in a powered wheelchair! There is support there for our other children, both adults who can understand the pressures of having siblings with complex medical conditions, and other children who are in similar families. We also know that the events will be accessible and that there are facilities available for our children that need them (changing facilities, etc.).
Our first Christmas in July as a family was so special for the kids and for us as their parents too. Unfortunately it wasn’t the first one of our time with SAT, as our son was very poorly in hospital at the time, but the following year was wonderful.
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. We’ve also had support when filling in DLA forms, which was so valuable when that was all new to our family.
Our eldest daughter has been lucky enough to attend sleepovers and campouts at The Bluebells, which she’s loved. She also received some online support sessions during a period of isolation we had to do due to medical treatment for our son. It was lovely for some focus to be on her during a really medicalised time in our lives.
We can’t thank you enough for the support you’ve provided us with over the last five years; it has been invaluable.