A Bristol mum has shared how children’s hospice at home charity it possible for her to attend her eldest daughter’s summer wedding
Something she feared she would miss because her son Harry, who has complex medical needs, requires constant specialist care.
Harry was born at 29 weeks with severe skull and brain abnormalities, and his early life was spent in emergency surgeries, intensive care units, and moments where numerous doctors told the family he would not survive. Yet hour after hour, day after day, Harry kept fighting, defying every medical expectation. Today, he is eight years old. Read more about Harry
here.
Jessie May entered the family’s life when Harry was just three months old, becoming a trusted source of specialist nursing care and emotional support at a time when they needed it most. Over the years, the nurses have helped Harry through complicated seizures, suctioning, tube feeds, blended diets, positioning, and the constant vigilance his condition requires.
Their presence has become woven into the family’s daily life. “There was a time when I wouldn’t leave Harry with anybody,” mum Sarah said. “But I would perfectly leave him with them. They’ve seen him at his worst and his best.”
So when Sarah’s eldest daughter, Ebony, planned her summer wedding, right in the height of the heatwave, when temperatures can trigger Harry’s seizures, Sarah reached out to Jessie May. She hoped a nurse who knew Harry well could support him on the day, giving her the chance to be just a mum, and not a carer.
Jessie May Nurse Andy, who has supported Harry since he was a tiny baby, stepped forward without hesitation.
Nurse Andy with newborn Harry
On the morning of the wedding, Andy arrived early to get Harry ready. “I didn’t need to worry,” Sarah said. “I left the house at half past seven knowing Andy was quite happy and quite capable of getting him in, sorted, fed, suctioned – everything.”
For Sarah, the impact was immediate and meant so much her and the family.
“I didn’t need to keep looking around to check whether Harry was still breathing,” she said. “I could focus. It was amazing to be able to be present and to watch everything that was happening.”
Just a 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 throughout the ceremony, supported Harry through the long service, managed his feeds, and made sure Sarah could enjoy photos and time with her family afterwards. “It was just amazing to be able to focus on my first born for a change, instead of my last,” she 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.”
For families like Harry’s, summer itself requires careful planning. Heat can trigger seizures. Public spaces often lack accessible changing facilities. Transport can be difficult.
Even a simple day out requires thought, preparation, and the reassurance that someone who understands their child’s needs is close by. With the right support, those precious moments – weddings, celebrations, and everyday outings – become possible.
This summer, for Sarah, that moment was watching her daughter walk down the aisle. Fully present. Fully involved. Held by the support of Jessie May.
To help Jessie May continue providing vital care for families like Harry’s, visit
www.jessiemay.org.uk and support their work today. Your contribution helps create moments that families will remember for a lifetime
