Last year, we shared Skye’s story as part of our Christmas Appeal. Now, Skye’s mum Sophie reflects on a Christmas that felt quietly special, the challenges the new year has brought, and the moments of joy that continue to mean the most to their family.
You can read Skye’s full story from our Christmas Appeal here.
“This Christmas felt different. It felt like Skye really understood what was going on, and for the first time she was completely captured by the magic of it all. Seeing that was just brilliant.
The only thing Skye asked Santa for was a double pushchair — and she was very specific that it had to be side-by-side so her ‘babies’ could sit next to each other. On Christmas morning, she was in her absolute element! No other presents mattered. She put every doll she could find into that pushchair and walked around with it all day. She was so happy.
The last two years, we thought each Christmas might be our last with Skye, so we tried to do everything. You go OTT because you think it’s your last one and you’re told to make memories while you can.
But this year we decided to keep things simple. We had our Christmas dinner and family over on Christmas Eve, then on Christmas Day it was just us. With everything already cooked, we spent the day in pyjamas, opening presents, playing, going for a walk with our dog, and simply being together. It felt perfect.
We asked ourselves what really matters, especially to the children. They won’t remember a big Christmas dinner — they’ll remember time together, playing, laughing, and eating around 46 pigs in blankets. We focused on what they would enjoy and remember because Skye is still with us.
Skye has been doing well since her treatment stopped, and we even celebrated New Year feeling hopeful that this was going to be our year.
But when Skye started back at school in January, she started to fall over without warning. Our Julia’s House nurse Claire noticed she was getting wobbly on her legs too. She’s also started getting contractions in her left hand again, where we’ve had to help her release it — something we haven’t had to do in over a year.
We took Skye to the physiotherapist who told us her muscle tightness has started to increase again, but we're not sure why. It feels so raw and worrying, but we’re holding on to the fact that there are no other signs of decline. We’re now working with her medical team to see if a muscle relaxing medicine might help. Hopefully she’ll be able to have an MRI and lumbar puncture again soon too, to give us some reassurance.
The big positive is that cognitively, Skye’s doing really well. Her learning at school is progressing, and she’s still absolutely got her performing spirit and is loving life! This time last year she couldn’t sing or dance, so to see her trying to perform whenever she can and find confidence in her own way of moving is amazing. She doesn’t let any of this stop her.
Through it all, Julia’s House continues to be a huge support for our family. We went to the Santa’s Grotto event at Christmas, and that was really special. Skye and the boys know everyone there now — it’s like a home from home.
The boys also had a sibling visit just before Christmas, which was really helpful. That day was particularly heavy for me and Kyle because we’d been to the hospital to review Skye’s Advance Care Plan. Maria and Carole took the boys out after school so Kyle and I could spend some time with Skye, process everything we’d been through that day, and get our emotions in check before going back into parenting mode.
And this Saturday, the boys are going ice skating with other children at Julia’s House, which they’re really looking forward to.
The Julia’s House nurses and carers are incredible at adapting to Skye’s needs and supporting us all. We’re so grateful we opened our doors to them. Having their support means everything.
We don’t know what the next year will bring, but we’re so grateful for another Christmas with Skye — full of magic and special moments together."
