When Sarah’s eldest daughter, Ebony, began planning her summer wedding, she hoped her mum would be able to enjoy every moment. With Harry’s complex medical needs, that meant making sure the right support was in place so the whole family could take part in the day.
Harry was born at 29 weeks, alongside his twin sister Bonny. While Bonny was healthy, Harry arrived with significant skull and brain abnormalities. “Anything a baseball cap would cover has no skull,” Sarah explained. “He has very little brain, and what brain is there is very underdeveloped.” In his first months of life, Sarah was told “pretty much hourly that he wasn’t going to survive the next hour, let alone the next day.” He is now eight years old. You can read more about Harry here.
Jessie May entered the family’s life when Harry was just three months old. “The nurses were really welcoming and friendly and soon became part of the family.” Sarah said gratefully. “There was a time when I wouldn’t leave Harry with anybody, but I would perfectly leave him with them. They’d seen him at his worst and his best.”
Over the years, Jessie May nurses have supported Harry through very complicated seizures, suctioning, tube feeds, blended diets, positioning, and the constant vigilance his condition requires. “No matter what Harry goes through, whoever is here on a Jessie May visit will know how to manage him extremely well,” Sarah said.
How hospice care helped Sarah be present for her daughter
So when Ebony’s wedding approached – right in the height of summer, when heat can trigger Harry’s seizures – Sarah reached out to ask whether a Jessie May nurse who knows Harry well could support him on the day. Having that familiar, specialist hospice care in place would mean she could be fully present for her daughter’s wedding.
Jessie May Nurse Andy stepped forward. He has known Harry since he was born, supporting the family through some of their hardest moments. “The three nurses – Andy, Lois, and Bryony – have been there throughout his whole life, and they’re all amazing,” Sarah said. “We’re used to them and they’re used to us.”
On the morning of the wedding, Andy arrived early to get Harry ready. “I left the house at half past seven,” Sarah said. “I didn’t need to worry. I’d left his stuff out ready… knowing that Andy was quite happy and quite capable of getting him in, sorted, fed, suctioned -everything.”
For the first time, Sarah walked into a family milestone without fear.
“I didn’t need to keep looking around to check whether he was still breathing,” she said. “I could focus. It was amazing to be able to be present and to watch everything that was happening.”
The difference was striking. Just one week earlier, at another family wedding without Jessie May support, Sarah had sat at the back of the room with Harry, ready to leave at any moment. “Although you’re watching the wedding, you’re focused more on Harry,” she said. “I definitely felt the difference.”
Andy stayed through the ceremony, supported Harry through the long service, helped with feeds, and made sure Sarah could enjoy photos and time with her family afterwards as well.
“It was just amazing to be able to focus on my first born for a change, instead of my last,” Sarah said.
Andy reflected on the day too:
“Being there on Ebony’s wedding day felt really special, knowing how much it meant to Sarah. My role was simply to make sure they could be parents that day, not carers. I’ve known Harry since he was a tiny baby, so I could see exactly how much it took the pressure off and allowed them to fully enjoy the moment with Ebony. Supporting families at times like this is exactly what Jessie May is here for; it was a privilege to be part of their day.”
What is hospice care for children with complex needs?
For families like Harry’s, summer brings extra planning – not just for special occasions like weddings, but for everyday life. This is where specialist hospice care can make such a difference, helping families manage complex needs while making precious moments like these possible. From accessible changing spaces and transport challenges to managing heat, preparing feeds and navigating public places that aren’t designed for children with complex needs, every outing takes thought and care. With the right support in place, those precious moments become possible.
And for Sarah, this summer, that moment was watching her daughter walk down the aisle -fully present, fully involved, and held by the support of Jessie May.
Andy has now supported several families at weddings, and it’s becoming a bit of a theme for him – one that speaks volumes about the trust families place in him and in Jessie May. It’s always moving to hear how much this support matters, and how reassuring it is for families to have someone who understands their child’s needs so they can fully enjoy these once‑in‑a‑lifetime moments.
