When Laura McArthur gave birth to her son Archie in 2017 at just 23 weeks gestation, life changed in an instant. Born at the very limits of viability, Archie spent the first 11 months of his life in hospital – seven in the Neonatal Intensive Care Unit (NICU) and four more at the Bristol Children’s Hospital.
Now seven years old, Archie is a joyful, sociable boy with a contagious smile and a mischievous sense of humour. He lights up around other children, especially when a toddler is mid-tantrum – something he finds particularly funny. He loves Disney films, being outdoors in any weather, and simply being around people.
But Archie’s start in life came with profound challenges. Due to complications at birth, including a cord wrapped around his neck, Archie sustained significant brain damage – known as HIE (Hypoxic-Ischemic Encephalopathy). He has quadriplegic cerebral palsy, chronic lung disease, limited vision and hearing, and requires a tracheostomy to help him breathe due to vocal cord paralysis. He is wheelchair-bound and non-verbal.
Despite this, Laura describes him as “an incredible little boy,” filled with a zest for life. “We wouldn’t have it any other way,” she says, with love and pride.
Jessie May entered the family’s life when Archie was just six months old, still in hospital. From those earliest days, their support has been unimaginable. “They’ve been with us on the whole journey,” Laura says. “They used to come and visit him in the hospital, and they’ve stayed with us ever since.”
For Laura and her husband Alastair, the support Jessie May provides has been nothing short of life-changing. Through regular home visits, the Jessie May nurses offer short breaks for Laura and Alastair, which allows them to enjoy moments as a couple, catch up on sleep, or simply take a break from the constant vigilance caring for a life-limited child demands.
“You forget how much you need to look after yourself,” Laura explains. “And if you don’t, you don’t have the energy to look after your child.”
It’s not just about giving the parents a break. The nurses are trained to provide high-level medical care, meaning Laura can trust them completely with Archie’s complex needs. “They bathe him, do his tracheostomy care, even feed him and put him to bed. One time I came home and they’d even washed up all the syringes. I just sat down and cried with relief.”
Jessie May’s support goes far beyond the clinical. They’ve enabled Archie to take part in hydrotherapy – an activity that would have been impossible without their assistance, due to the medical complexity of managing his tracheostomy in the water. They also make sure Laura and her family are part of a wider, understanding community.
“They organise family events where we can meet others in our situation,” says Laura. “It’s so hard to explain to friends who don’t have a disabled child what it takes just to show up somewhere. But at Jessie May events, everyone gets it. You don’t feel like the odd one out – you feel included.”
This sense of community and shared understanding provides emotional support that’s hard to quantify but deeply felt.
As a former parent trustee for Jessie May, Laura knows the importance of long-term, sustainable funding for children’s hospice services. With government support for hospices facing uncertainty, she is clear in her message: “Hospices like Jessie May make us feel like parents again – not just carers. They allow us to be a family. Without them, we’d struggle to function.”
She urges the government to continue and increase funding: “Jessie May is our lifeline. We’d be lost without them.”
