Ella Gale

Ella, 12, has a rare brain condition called Lissencephaly, a condition that affects around one in 12 million people. Because her brain did not develop the usual folds during pregnancy, Ella lives with complex needs, including epilepsy, high muscle tone and global developmental delay. She relies on her family for all of her day-to-day care.

It was Ella’s healthcare professionals who first suggested Jigsaw over 5 years ago. Like many families, Hayleigh had heard of the hospice but wasn’t really sure what it was.

“When you think of it, you just think it’s going to be like a hospital; the white walls and clinical setting.” she explains. “I remember the first time I came, and it just blew me away. I thought, ‘Oh my word, this is amazing. Can I come?’”

Even so, taking that first step wasn’t easy.

“I was terrified,” Hayleigh admits. “I was riddled with anxiety, and I genuinely believed that nobody could look after Ella the way I do.”

Although she visited Jigsaw when Ella was younger, it took several years before the family felt ready to access support. When the time finally felt right, the team worked alongside Hayleigh every step of the way.

“They went completely at my pace,” she says. “I remember doing little one-hour sessions, staying with Ella as many times as I needed to, and gradually building things up. The communication was incredible, which was crucial for me. They built that trust, and when you’re trusting people with the most special thing in your life, that means everything.”

“Coming to Jigsaw was a very big step for me, as it is for any parent with a child who has additional needs or needs any sort of care,” Hayleigh says. 

“But she absolutely loves it. The hesitation was more from me. It was a big push for me to do, but I needed to do it for her and she loves it, Jigsaw is amazing.” 

One memory still stands out vividly.

When Ella was preparing for her first overnight stay, Hayleigh arrived to help settle her in and was surprised by what she found.

“I remember walking into her room and seeing lovely girly bedding. I’d expected plain white sheets because I still had this idea in my head that it would feel clinical. Instead, it felt warm and homely. That was the moment I realised it really was a home away from home.”

Now, more than three years later, Ella absolutely loves coming to Jigsaw.

Whether she is baking, painting, enjoying sensory activities or heading out on adventures, every experience is tailored to her needs and interests.

“She loves painting,” laughs Hayleigh. “Usually, the girls end up getting covered in it! And she loves getting out and about. She’s been to Rheged, Walby Farm Park and even Gelt Gladiator. They make sure she gets to experience so many things.”

Most importantly, Jigsaw gives Ella the opportunity to be herself and truly independent. 

She adds: “I think that independence is huge for a child with complex needs and in Jigsaw she gets her own time, just to be her. She gets to have a lot of fun, meet new people and do lots of different things. She particularly loves all the messy play and absolutely loves the Smoothie Bar.”

“She loves everything and loves having that one-to-one care, purely for her, which enables her to access the different activities she needs help with.” 

While Ella enjoys her time at Jigsaw, the support has also had a huge impact on the whole family.

Hayleigh and her husband Rob have two younger sons, Benjamin and Jacob, and respite care provides precious opportunities to spend quality time together.

“There are things the boys love doing, like trampoline parks, that wouldn’t really work for Ella,” Hayleigh explains. “Jigsaw gives us the chance to do those things without feeling guilty because we know Ella is having an amazing time too.”

The respite also allows Hayleigh a rare chance to pause.

“We get that time which is just for us too, just to chill and not have to think about medication, feeding, changing, etc. You don’t realise how much you do until you stop,” she says. “When Ella is at Jigsaw for a couple of nights, you suddenly sit down and think, ‘What do I do now?’ You’re so used to being 100mph all the time. It gives you a chance to breathe.”

The family has also benefited from opportunities through the Barry Wells Trust, which works closely with Jigsaw to create special experiences for children and families.

“We’ve been to the races, and Ella absolutely loves horses,” says Hayleigh. “We’ve been to Disney on Ice too. What’s lovely is that they include the whole family. We get to make memories together, and that’s really important.”

Looking back, Hayleigh wishes she had worried less about taking that first step.

“To anyone who’s unsure about coming to Jigsaw, I’d say don’t be,” she says. “Reach out. They’ll go at your pace and do everything they can to reassure you. Honestly, you won’t regret it.”

Today, when Ella’s stays are booked in, the family plans activities knowing she will be safe, happy and cared for.

“We know she’s looked after, and she loves it here,” says Hayleigh. “The support Jigsaw gives families is something you don’t fully appreciate until you have it in your life.”

For the Gale family, Jigsaw is a place where Ella can thrive, her family can recharge, and everyone feels supported.

As Hayleigh puts it: “Amazing, caring and a home away from home.”