Maisy-Leigh’s story

It’s impossible for anyone to feel sad around Maisy-Leigh because she’s got a smile that is so contagious you can’t help but smile back. She’s also got a life-shortening and extremely rare genetic condition called Coffin-Siris syndrome, with just 200 people diagnosed worldwide.

For Maisy-Leigh, who turns seven this year, the condition has affected the development of her brain and means she isn’t able to talk and is mostly fed through a tube as she finds it hard to swallow. She’s also prone to respiratory problems and life-threatening allergies so her parents, Luke and Hayleigh, can spend a lot of time in hospital with her.

Hayleigh shares their story

Maisy Leigh looking happy with her family

“I’d always been told I couldn’t have kids because I have endometriosis”

When Luke and I found out I was pregnant with Maisy-Leigh it was an amazing surprise. It was a bit of a difficult pregnancy as I was in and out of hospital because she wasn’t moving around much or growing very quickly. I didn’t feel her kick until I was 32 weeks, and it was only four weeks after that a doctor took one look at a scan and we were told, “she needs to come out, today!” I had a C-section and just managed to catch a glimpse of Maisy-Leigh before she was taken past our heads to the high dependency unit. By the time I got to see her five hours later, she was really poorly and needed support with her breathing. The doctors told Luke not to go home as I don’t think they expected her to last the weekend.

It was total whirlwind from there. Maisy-Leigh was in critical care for almost four months, and we were told she had a number of complex conditions which would affect her brain, vision and coordination. Doctors also noticed her ears were set low on her face, she had a wide nose bridge, and quite a lot of hair on her face and back – all symptoms of something called Coffin-Siris syndrome. The condition is so rare that there’s only 200 known cases, so when she was diagnosed we couldn’t believe what was happening.

Maisy-Leigh as a baby in intensive care

“Life was very up and down for the first few years”

I don’t think anyone’s able to prepare for what families like ours go through. Luke and I both had to give up work as the care Maisy-Leigh needed was 24-7 and we had to take it in turns to sleep. In those early days it felt like everybody else was happily going about their lives, but as Luke describes it, it was like we were stuck in the film, The Matrix. Our lives were going so slowly, nothing felt real, and we couldn’t understand why people were smiling – what was there to be happy about?

Things changed when Maisy-Leigh was one year old and we visited Chestnut Tree House for the first time. We were a bit anxious about being referred to a children’s hospice, but as soon as we walked through the door it felt so homely. We were treated like family and given so much care and attention. As parents you can’t wish for anything more than your child to be loved and everyone there just adored her.

Maisy Leigh looking happy and playing

“We can relax knowing she is happy and cared for”

Last year, Luke and I got married and Maisy-Leigh stayed at the House for nine days while we went on honeymoon to Greece. I was so scared as I’d never been apart from her for so long, but as soon as we dropped her off and I saw the smile on her face, my worries were gone.

She’s a total whirlwind of energy and the first thing she’ll do on any visit is head straight to the music room. Her favourite thing is playing piano with the Activities Team – she likes to put her hands over theirs on the keys and they can sing and play for hours. She’s very cheeky and enjoys keeping the staff on their toes, so when she’s not whizzing down the corridors in her walker she loves to play in the gardens, mess around with arts and crafts or relax in the multi-sensory room.

Maisy Leigh at Chestnut Tree House

“Thanks to Chestnut, we can be a normal family”

For Maisy-Leigh, Chestnut Tree House is somewhere where she can have fun, laugh, and do things that any other child can do. But it’s also a place where, with a little bit of support, we can do normal things together as a family too. Like one weekend where we stayed over and all went swimming with the help of a nurse for the first time. We’d always been too scared to take her to a public pool, so seeing her little face light up, and her legs kick around in the water at Chestnut was incredible. And then that evening, Luke and I we were told we could go and chill out as a couple, have something to eat and watch tv whilst Maisy-Leigh was looked after.

We also get to spend rare time together as a couple when Amie from Chestnut Tree visits us at home. She and Maisy-Leigh will go out to the park and Luke and I might go for dinner, sit and watch a film together, or just catch up on a few hours sleep. That time together is really important, because yes, we are Maisy-Leigh’s parents, but at the same time we are still Hayleigh and Luke and we still have a relationship that we need to keep going so we can be the best team for our daughter.

Maisy-Leigh and family in the pool at Chestnut Tree House

“It’s nice to know you’re not alone”

There are times it can feel like we’re the only couple going through this. But at Chestnut we can talk to other mums and dads like us and it helps us feel less alone. Sometimes though, it can all build up and feel overwhelming – like recently when Maisy-Leigh was in hospital for weeks at Christmas time and stopped breathing. It’s only when you come out of those scary situations that it hits you and that’s when we can talk to Paula, our Chestnut Tree House counsellor. Sometimes she’ll just sit there and listen to me ramble on for ages and it really helps me get to grips with how I’m feeling. Luke doesn’t always find it as easy to open up about his feelings, but he can listen and join in if he wants.

Maisy Leigh and family

“Chestnut gives us the respite we need to carry on”

Often it’s not until we see the stars hanging on the doors at Chestnut, which let people know that a child has died, that we remember why Maisy-Leigh has a place there. Knowing that your child will pass away before you is every parent’s nightmare, but we’re so grateful that she is still here and still smiling. She’s our biggest inspiration.

After she was born and we were told her life might be short, we made a bucket list of everything we wanted to do with her, and we have ticked it all off! She’s met Minnie Mouse at Disneyland and we’ve taken her on caravan holidays around the UK and a family trip to France. Now, it’s me and Luke’s turn to do something together and he’s just surprised me with a dream holiday to Mexico for our first wedding anniversary! Maisy-Leigh will be staying at Chestnut for two weeks and all the staff are so excited to have her. Opportunities like this just wouldn’t be possible without Chestnut Tree House – they give us the time and the strength we need to carry on and we’d be lost without them.

Luke’s taking on a sponsored skydive later this year, you can support him on JustGiving.