Family stories

Lilly’s story

Cheeky and cuddly, Lilly loves nothing more than long hugs and a soak in the bath before bed. She also has a condition so rare that she was only the seventh child in the world to be diagnosed. For her mum, Paula, Chestnut Tree House means a break from constant caring and a chance for Lilly to explore and have fun like any other ten-year-old.

“We’ve been in and out of hospital since Lilly was born”

Lilly was born three weeks early, which is classed as full-term so didn’t raise any real worries. It was only when she failed all her hearing tests, barely gained weight, and didn’t reach any of the milestones you’d expect that we knew something was wrong. We had someone tell us, “Give her another six months or so and she will probably be walking”. Well, she is nearly eleven years old now and we know that it is never going to happen.

Lilly has had hundreds of tests, but it wasn’t until 2019 that she was diagnosed with You-Hoover-Fong Syndrome after taking part in the 1,000 Genomes Project. Her condition is so unusual she was only the seventh child in the world to be diagnosed. Lilly is profoundly deaf, non-verbal and has complex needs. But in my eyes, she is perfect as she is.

A selection of images of Lilly

“Touch is by far her strongest sense”

Lilly is very sensory, and touch gives her the constant reassurance she needs. Just something as simple as holding a hand, having her head massaged or her face stroked means so much to Lilly. She is a very cuddly girl, and when the Chestnut Tree House nurses and carers look after her, they always fight over who is getting a cuddle first!

Another thing Lilly loves is having a bath, something she can’t do at home. So, when she stays at Chestnut, they always give her a warm bubble bath before bed every night. She loves her stays at the hospice, and they are also one of the only times I can have a few nights break and a rest.

“Last year was an awful year”

When you’re looking after a child like Lilly, it’s non-stop. And last year was one of the hardest times. Lilly kept stopping breathing and going blue when she was laying down for bed or getting her nappy changed. Surgeons discovered she’s got a collapsed windpipe which squashes when she lies down. Now, she needs to be upright all the time and uses a Continuous positive airway pressure (CPAP) machine at night- a ventilator which keeps her airways open while she sleeps.

We spent the majority of last year stuck at home as it didn’t feel safe to go out and do things. The thing that helped most was the home visits from the Chestnut community nurses. I knew Lilly was always safe and happy with them and their visits meant I could leave the house for a couple of hours, even if it was just to do a bit of shopping.

An image of Lilly being held by her sister

"Chestnut Tree House is amazing, they really are. They are always on the other end of the phone. If there’s a problem they always come up with something, even if that is just pointing us in the right direction."

“I know Lilly is safe and having fun when she is with Susan”

Taking Lilly out can be quite stressful. There’s so much equipment to remember, and I need to make sure there’s wheelchair access and somewhere I can change her. Lilly isn’t toilet trained and never will be – that’s ok, but I can’t tell you the number of times I have to change her on a bathroom floor and just burst into tears.

When Susan, our Chestnut community Healthcare Assistant, visits she takes Lilly out for a day of adventures and looks after all her care needs. While they’re having fun at a local farm or park, I can spend uninterrupted time with my other children – they’re 15 and 18 but they still need their mum. Other times, Susan will look after Lilly in the evening and me and my partner will go out to the cinema or for something to eat. That time together is precious and something that I think other couples can take for granted.

A selection of images of Lilly and her siblings

“I’ve had a lot of counselling the last few years”

As much as I try and hide it, sometimes it all gets too much. It’s not always easy to speak to my family about things as they have their own worries, so I have sessions with a Chestnut counsellor. It’s a chance to get things off my chest and I really enjoy our time together. It’s not just Lilly I talk about, sometimes it’s things from my past too. Just chatting it through helps me make sense of it all. And that same support is there for all the family as well if they want it.

Another thing that helps is being around other Chestnut families. Sometimes people with mainstream children don’t realise what a struggle it can be, or they’ll just stare. But it’s different when you’re with other families that are in similar situations to you.

“We feel like part of the Chestnut family”

Recently, we got Lilly a standing sling at home. She absolutely loves it because it gives her a little bit of freedom, without relying on anyone to hold her up. The first time we put her in it, was the first time I was able to kneel in front of her and give her a cuddle. I couldn’t believe it when she wrapped her arms around me and cuddled back. Because having a child with extra needs, you just think that you’re never going to get that response. And when you do, it melts you.

The team at Chestnut Tree House are brilliant and they need all of the help and support that they can get so they can continue doing what they do for families like us. I don’t know what we would do without them.

Lilly in her standing sling