Most of all, Skye loves to dance and sing. Mum says she would sing her heart out in the bath every day. She loved belting out ‘Girl on Fire’ by Alicia Keys.
Then on her first day of nursery, when Skye was three years old, everything changed.
Her parents thought she’d had a stroke because the right side of her body suddenly stopped working. Skye was dragging her leg and slurring her words. They rushed her to hospital for tests, but nothing could be found, and they were sent home to wait for blood results.
Over the next six weeks as her family waited, Skye progressively declined.
“It was a week-by-week decline,” says Sophie. “She started to choke on her food and drool constantly. One day she went into nursery walking and by the end of the day, she could hardly do it anymore. She didn’t have the strength to sit-up or hold her head up. Eventually, she just gave up talking and singing completely because she was slurring so badly that people couldn’t understand her.
“We felt like we were gradually losing different parts of our little girl.”
When Skye’s blood results came back, they still looked normal. The doctors went back over every test to see what they were missing. Something had to be wrong.
“As time went on, Skye became scared and frustrated. There was never any cognitive decline, so she was still switched-on but in a body that was failing her,” says Sophie. “She’d hardly smile or laugh anymore, and it was clear that she was depressed. It broke our heart.”
Just a few weeks before Christmas, Skye’s mum and dad were told that this would likely be their last year with Skye, and to make memories while they could. It was a moment that broke Skye’s family. Mum remembers crying every day in secret.
Remarkably, it was in this time of pain and grief that Skye found strength. She started to giggle again; something sparked inside her. That Christmas was one the family will never forget.
“I remember that Christmas, all of us putting up the tree and helping Skye put the star up on top. It was a really joyful time, and she absolutely loved it, but at the same time it was hard for us to be happy. We found ourselves laughing, crying the whole day. Going into the New Year, we didn’t have any fireworks or celebrations because we knew it was going to be one of the hardest years of our lives.”
In January 2024, the family were invited to visit Julia’s House. They remember being filled with fear.
“It sounds awful but we were expecting to walk in, and for the place to be all about death. But it wasn’t like that at all,” says Sophie.
“There was warmth and love and children laughing, and the whole environment was bright and colourful. We were shown the mermaid suite, which is where we could go with Skye if the time came. I remember saying to Kyle, 'This is beautiful; Skye would absolutely love being in this room.’ She loves mermaids and being able to see the outdoors, and there was a soft light coming in through the window.
“I knew then in my mind that if the time did come, this is absolutely where I would want Skye to be. And as a family, where I would want us all to be – in a beautiful setting that would still bring joy, even in such sadness.”
Since then, Julia’s House has provided care, comfort and joy to Skye’s whole family.
“It’s the silly fun they offer Skye on her respite sessions, the sibling support for the boys, the social opportunities for us all, and just the most amazing help for me and Kyle. And the lovely massages too!” says Sophie.
“Even the little check-ins they do, makes it feel like you’re not on your own. At Julia's House you can chat to the nurses, and they just get it. They're a shoulder to cry on, and they’re right there with you, celebrating the little wins like you are.
“I don’t know where we would have been without Julia’s House. Their support has been lifesaving for our whole family.”
Earlier this year, doctors believed they had found other children with the same genetic condition – just 12 in the world – and began Skye on a steroid and immunoglobulin infusion treatment. They were cautious; they didn’t know if it would work or what to expect. Each child with the condition seemed to react differently to treatment, some were still in wheelchairs and unable to talk, while others had regained most of the skills they had lost.
After the first treatment, Skye stopped drooling almost straight away. She went from needing 15 bibs a day to none. By the fifth infusion, she was saying words and using a special walking frame to walk.
“When she took her first steps, I remember calling Nurse Claire and saying, ‘Skye’s walking!’ And she shared that moment of pure joy with me. The love that the Julia’s House nurses have for the children is like family. They go on the rollercoaster with you, through the lowest lows and the most exhilarating highs.”
It’s been a year of treatment now and over the last two months, Skye has started trying to dance and put on little shows at home again.
“Only the other week, Skye started singing her favourite song again in the bath. It felt amazing to hear that beautiful sound after so long, and I just started crying,” says Sophie. “She saw me and said, ‘Are you okay?’ And I said, ‘Yes, Mummy’s just got happy tears!’
“After this disease took everything from her, we always said, if we can get anything back, it’s Skye’s voice.
“Now, it really feels like I'm getting my little girl back again.”
The family can’t get too excited.
They are still under the palliative care team, and they don’t know what the future holds for Skye. Her condition is so rare it doesn’t even have a name. But they’re hopeful.
“We’re hoping that Skye is going to be one of these amazing success stories, and actually one day is discharged from Julia’s House,” says Sophie. “And that would break our hearts because we love Julia’s House so much. But it would be such a blessing because we know for most of the children and families cared for by Julia’s House, it’s a different story.”
They’ve sadly been told the treatment that seemed to give them their little girl back now has to stop.
“Skye has come to the end of her infusions. Unfortunately, it’s not a long-term solution,” says Sophie. “We now watch and wait to see if Skye has any decline. And if she does, the doctors will discuss other drug options that might be available.
“We are terrified of the uncertainty and unknown. These monthly infusions have been a safety blanket and have given us some control. But deep down we have faith that she will be okay, as there’s no other option.
“She is a fighter and hopefully this will be the start of new positive chapter for her.”
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Julia's House has a CQC 'Outstanding' rating (Feb 2023), ranking us in the top quartile of all hospices in the UK. Click here to read the report.
