Niamh & Leo - Carers Week 2026
Meet Niamh. She is 16 years old and helps her Mum and Dad look after her little brother, Leo. She helps them do his medication, help with his feeds and takes him to the toilet. Gemma, Leo and Niamh’s Mum, explained: “She provides the emotional support as well as the practical support. She knows Leo stupidly well so if things are different, she just knows.”
When Leo was born, he struggled to maintain his body temperature. He spent his first week in hospital being treated for an infection. However, after being discharged, one day whilst shopping he just stopped breathing.
Gemma reflected: “Looking back, that was just the start of it all. When he was 9 months old, he had a seizure at the hospital, but I was with him in the shop, so I videoed it. It was sent across to Nottingham, and he was transferred across that night. He was diagnosed with epilepsy at that point.”
Growing up with only 13 months difference, Niamh and Leo always “felt more like twins”. Niamh said: “I can’t remember when Leo was born. Obviously, we’re very close in age so there was never much of a difference growing up – I never pulled the older sister card on him!
“He majorly sees me as his big sister now and mentally, he isn’t 15 years old. He was not as ill as he is now. I remember how it was before but not clearly, so it wasn’t a massive ‘Oh my god, what happened’ because it happened over time, you just had to adapt to it.
Gemma added: “One day, he was just lifeless and his blood sugars were doing crazy things, that’s when he was also diagnosed with Dumping Syndrome. He had a jej fitted and he was thriving for a while, then, one day, just out of the blue in 2018, he had a big Tonic Clonic, and from that day on we’ve never had control of his seizures – the medication has never worked since then.”
Although Great Ormond Street agreed to do Deep Brain Stimulation on compassionate grounds after things “took a turn for the worst”, it hasn’t “fixed” him. “He’s the fourth in the UK to have that surgery, which has far from fixed him, but it’s given him back some quality of life. He still has seizures everyday but compared to the path he was going down, you can’t really put into words where he is now, because I don’t think he’d still be here if we were not given that opportunity.”
Chris, advanced nursing assistant, said: “Niamh is a fantastic person. When me and another staff member came, we read the signs of seizures but, due to changes we hadn’t seen yet, Niamh actually guided us and told us he was still seizing, so we followed the plan and let her take lead role. I just think she’s a superstar.”
Gemma added: “I’ve just done his emergency response care plan, and I’ve put Niamh down as the third point of contact. I want her to be the one to be consulted in our absence because I know she would have Leo’s best interests at heart. She’ll swipe him with his magnet, she’ll change his DBS settings. She does everything that me and their dad do and we never have to ask her to do it. Niamh is just amazing, I have no words. I’m very proud of her. She’s everything you could wish for in a daughter.”
When asked what advice she would give other young carers, she said: “Don’t put too much on yourself. It can be very upsetting sometimes, but if you let being upset rule your life then you’re never going to enjoy YOUR life. Always make time for yourself. Obviously, it’s so nice to be helpful and it’s so rewarding, but you are a person. It’s important for Mum to have breaks and for Dad to have breaks and myself to have breaks.”