Heidi’s story

Our 15-year-old daughter, Heidi, is a home bird. She loves hanging out with her seven-year-old brother, Edward and our dog, Radar – especially if they’re watching Mr Bean or Peppa Pig. She has three half-siblings who adore her too. Heidi has a great sense of humour, so everyone is always trying to make her laugh. Family is what makes her happy, and she loves going to school and seeing her friends. Nowadays, she has a very enriched life – but we’ve had to work hard to build it. Our local children’s hospice, Chestnut Tree House, has been a big part of that. 

Heidi has Rett syndrome, a rare genetic disorder that affects her brain development and results in mental and physical disability. It’s progressive, which means that Heidi has lost many of the skills she once had. Some days she can walk, but she uses a wheelchair most of the time. She mostly communicates through eye contact and sounds. 

Images above: Heidi as a child

Nobody knew how to read the signs

When she was younger, this wasn’t how we imagined Heidi’s life would be. When she was born, we thought we had a neurotypical child. But looking back, the signs were there from the start – it’s just that nobody knew how to read them. When she was a baby, she screamed and screamed, but she was my first child, so that was all I knew. When I look back, every photo of Heidi as a baby or toddler shows her wringing her hands. That’s a clear sign of Rett syndrome, but the condition is so rare – affecting only one in 10,000 babies – that even the medical professionals hadn’t encountered it before.  

Her development raised some red flags – she didn’t meet some of the expected milestones at her one-year check, and she didn’t walk until 17 months. By the time she was two, we were very worried. It felt like we were being passed from professional to professional, just trying to get some answers. It took years for us to get a diagnosis. I was pregnant with Edward and petrified of what the future might hold. Our consultant agreed to do some genetic testing, which picked up the genetic mutation that causes Rett syndrome. 

Nevertheless, Rett was only recognised in England as a condition in 1983, so awareness is low. Even after we got our test results, it took a long time to get the support we needed.  

Images above: Heidi and Edward in the pool at Chestnut Tree House

Reaching crisis point 

When Heidi was nine, we hit crisis point. She wasn’t sleeping, which of course meant we weren’t either. She became violent and nobody could control her. I even had to have an operation on my neck because she ruptured a disc during a seizure. 

Getting the diagnosis was bittersweet. Hearing that our daughter has a life-limiting condition was horrific, but at the same time it’s opened a lot of doors. She was prescribed anti-seizure drugs, which changed everything, and now we have an amazing medical team around us – which includes Chestnut Tree House. 

Our first referral to the hospice was during the 2020 lockdown which meant that at first, we only had visits at home. Heidi didn’t visit the House itself until later, when she was 11 or 12. 

Rett syndrome is a progressive condition, and a lot has changed for Heidi over the years. She used to be able to feed herself, for example, but that’s no longer possible for her. She now uses a wheelchair, and we’ve had to have our house adapted for her needs. She has quite a lot of respiratory problems, but for the moment we’re managing without oxygen.   

We feel quite lucky in some respects, because compared to a lot of children with Rett syndrome, she’s quite able. But it’s all relative, and we are very far away from living a mainstream life. Sometimes I hear people complaining that their baby doesn’t sleep, and I think well yes, but my 15-year-old still doesn’t sleep.  

Chestnut provides a lifeline

The past six months have been hard, because Heidi has been quite sad. Previously, the one thing you could say about Heidi was that she was always happy, but recently there have been a lot of tears. She has fluid on her knees, and she’s been in a lot of pain. Seizures have been a big problem for her again recently and they’re happening at least once a day, if not twice a day and during the night.  

Anything she’s really loved doing, she has lost the ability to do – like scooting, which was one of her favourite things. 

That’s why Chestnut has proved such a lifeline. Although all the families who use the House are on different paths, we all appreciate the worry and isolation that comes with having a child with a life-limiting condition. Nobody is feeling sorry for you. There’s a lot of understanding and respect, from both the staff and other families. 

I found it quite hard visiting the hospice at first. The team hang stars on the front door when a child has died and of course when you see that, your heart sinks. At first, I didn’t realise that Chestnut is primarily about enhancing people’s lives. It is a lovely, happy place – very loving, and very warm. Now when I see the stars on the door, I still feel sad, but I also feel grateful that those families are being loved and cared for in this wonderful place 

Images above: Heidi and brother Edward in the sensory room at Chestnut Tree House

Facilities and support for the whole family

At first it felt very strange that other people were caring for her – you need to build that trust, and we were helicopter parents for a while.

When she’s at Chestnut, Heidi likes to swim in the hydrotherapy pool. She really loves being outside and enjoying nature, so the Woodland Walk is a favourite. On days when her mobility is poor, she can enjoy the grounds in her wheelchair, visit the accessible play park and ride on the special roundabout. On better days, Edward might take her hand, and she’ll run there with him in her own way.  

Chestnut has been there for the rest of us too. We’ve been to some of the sibling group activities, and I have started counselling sessions. 

For us as a family, it’s given us breathing space, which is especially helpful for Edward. If we go away with Heidi, it’s just not a holiday, but knowing Chestnut is caring for Heidi helps us feel confident to take him off to have his own experiences.  

Images above: Heidi cycling on the seafront and in her wheelchair at the House

Giving back to Chestnut Tree House

Because Chestnut has given our family so much, we want to give something back to the charity. I am a former primary school teacher but when I was pregnant with Heidi, Richard and I started Floral Image in the UK after a chance meeting with the company’s Australian founders. Looking after Heidi has spurred me on, given me purpose and driven me forward.   

As business owners, we want to share our success with the charities that have supported us as a family. Through fundraising balls and other events, we have raised around £70,000 for another local charity that helps Heidi, and her school. In the past 18 months, as we’ve spent more time at Chestnut as a family, we’ve started supporting the hospice too. 

We try to donate to a variety of charities, but we really feel that with Chestnut it is all appreciated – even the smallest amount. We’ve collected clothing for the charity shops, sponsored the Snowman Ball and supported the Big Hoot art trail. We’re now looking to expand our corporate relationship with Chestnut, possibly by putting on an event together. 

It can be exhausting explaining to people that Heidi can’t do something she could do the last time they saw her.  People always want to make things better, and that’s not possible. 

At Chestnut, no one’s trying to fix you or your journey. They just want to ride it with you.