"The only thing is that tomorrow is never guaranteed - but that just makes it more of an adventure, as every day's a gift": Freya's story of life alongside her brother Harry, who has complex medical needs.
At Jessie May, we know that when people think of children with life-limiting conditions, they often picture the child and their parents. But siblings – the quiet constants in the background – are just as deeply impacted. At 21, Freya understands this better than most. Her younger brother Harry has a life-limiting condition, and from the moment he came home from hospital, she’s been right there with him – not out of duty, but out of love.
“Harry is a cheeky monkey,” she smiles. “He has the most amazing eyelashes that anyone would be jealous of – I know I am! He’s got such a personality and can really make your day if you catch him giggling. I view him no differently than any other of my siblings, as medical conditions don’t define you and he is my brother first, and a medical mystery second. The only thing is that tomorrow is never guaranteed, but that just makes it more of an adventure as every day’s a gift.”
Freya was just 14 when Harry and his twin sister Bonny were born. Even then, she was a hands-on part of the care team at home. “I helped look after him when the twins first came home from hospital,” she says. “I was always there if anyone needed anything. I knew what medications were needed and when – I was the second carer.”
At times, it was a full-on responsibility for a teenager. “If I wasn’t helping with Harry, I would have Bonny with me. For a period of time I was never without one of them.”
One of her most vivid memories is holding Harry for the first time. “I remember being terrified I would hurt him as he was so small and fragile. Mum told me it was silly and passed him to me as if it was normal and walked away. I was so anxious that he picked up on it – all his SATs dropped until I calmed down. He’s cheeky like that. But once I relaxed, he smiled at me and went to sleep.”
Freya stays positive, but she admits that not everyone has made things easy, especially when they first returned home. “People staring at him made me angry,” she says. “We were always happy to answer questions, but the staring really got on my nerves. It got so bad we ended up making a custom T-shirt for Harry that said, ‘Take a picture – it’ll last longer.’”
However, there were some people who made returning home easier, and that was the Jessie May nurses. They have been a lifeline for the whole family – not just for Harry. Whether it’s giving Mum and Freya a moment to catch their breath, offering calm reassurance during a crisis, or simply being a familiar, friendly face; their support has helped make life feel just that little bit more manageable. And with that, they see the whole family, including siblings like Freya.
“As nurses, we’re welcomed into people’s lives at such a vulnerable time,” says Jessie May’s End of Life Team Leader, Lois. “We’re not just there for the child – we notice the siblings too. We see the love, the responsibility, the quiet sacrifices they make. Supporting them, even in small ways, is such an important part of the care we give.”
When the nurses aren’t there, a typical day in Freya’s household starts with music and movement. “Harry will have his Toniebox on as we get him ready, Bonny will have her music playing in the background, and I’m in charge of the dogs. After school there is no routine other than meds and repositioning as we have many things to do and very little hours to do it.” It’s a house full of activity and love – but also one where the balance can shift quickly if Harry becomes unwell.
“If things escalate and he needs to go to hospital, I’ll usually switch with Stu (Harry’s Dad) and go in with Mum and Harry. I deal with hospitals better, and I tend to make notes so Mum can focus on what’s being said and read it over later.”
Freya now works in a care home for adults with severe learning difficulties – a path shaped by her early experiences with Harry. But she’s quick to downplay any suggestion that this makes her stronger than others. “I was raised around children and adults with learning difficulties,” she says. “It just feels like a natural part of who I am.”
What she does feel is pride. “I’m proud that at seven years of age, Harry is still here after being told he would never breathe on his own. Every time he does something the doctors said he wouldn’t, I’m so proud.” It’s this deep love and perspective that shapes the way Freya approaches her role as Harry’s sister – but it doesn’t mean things are always easy. Like many young carers, she’s had to find her own ways to process and cope with the emotional weight that comes with her brother’s condition.
When things feel overwhelming, Freya turns to her support system: her dogs and her aunty mainly. “My aunty used to pick me up and we would go for a drive if things got too much while I was helping care for Harry, as I was only 14 when they were born, it’s a lot to take on as a teenager.”
To other young people in her position, Freya offers some advice: “Keep going, take everything in your stride, don’t let anyone say it can’t be done or that something isn’t meant to be. If you want to get involved and help with the caring, do it as long as it’s safe to do so; if you want to read to them and make up stories, then do. It’s all up to you how involved you want to be but don’t shut down and don’t block them out as you will miss out on some of the most amazing things if you don’t.”
She is very clear-eyed about the impact Harry’s condition has on their lives. “Yes, there will always be things we miss out on,” she says. “But at the same time, most things Harry can do, we do. We’ve been on beach trips, had a caravan holiday, and last month me, Mum and Bonny went to Cardiff for a couple of days.”
Freya knows that living with a sibling who has complex medical needs can feel isolating at times, especially when others don’t fully understand. But she’s also found strength and comfort in the kindness of those who truly do get it. “People who haven’t experienced what you have, will never see things the way you do. Everyone has their own opinions, and you can’t change that. But those who have a child or sibling with a life-limiting illness will know that others in the same boat are amazing, kind, and will go out of their way to help if they know you’re in need. We’ve sent out gift baskets and received specially adapted clothes that fit over Harry’s head when his usual ones became too small. The community is amazing.”
For Freya, being Harry’s sister is simply part of life – but it’s one that’s taught her what really matters. “Family is more important than anything – especially when tomorrow isn’t guaranteed.”