On the 12th of December, Margot entered the world, eight weeks premature. At just 19 days old, she was diagnosed with the extremely rare genetic condition known as Trisomy 9 Mosaicism. This condition meant she had a third copy of the 9th chromosome in some of her cells, setting her on a path that few had travelled before. With only 100 known cases worldwide, Margot’s family faced uncertainty and an unfamiliar road ahead.
It was during this time that Margot’s parents, Vicks and Greg, were introduced to Jessie May. The hospital referred them, and soon after, they received a call from a warm and friendly voice that quickly put them at ease and introduced them to the Jessie May team. Initially skeptical about the potential benefits, they soon realised how wrong they had been. The three-hour visits from Jessie May turned out to be invaluable, providing medical care, a short break and much-needed emotional support.
Margot’s needs are exceptionally specialised, and the continuity of care offered by Jessie May proved to be a game-changer for the Griffiths family. Unlike hospital relationships, where frequent changes occur, Jessie May’s consistent and familiar faces provided comfort and a natural continuation of care. The emotional support extended to the family was equally crucial, as they navigated the challenges of raising a child with a disability.
Two years ago, Vicks and Greg reflected on the support Jessie May had provided, when Margot was just two years old. It was already clear how transformative the care had been – not just for Margot, but for their whole family, including her big sister Mimi. Greg said then, “I can’t imagine life without Jessie May – they have become an integral part of Margot’s life, our lives, and they give us that huge love and support that is invaluable… I would encourage anyone to support them.”
Now, Margot is four years old and her parents can still say the same about Jessie May – their bond with the nurses is stronger than ever.
Since filming that video, life has evolved. Margot has grown in confidence and resilience. Although she still faces the challenges of her condition, she’s stronger now – recovering more quickly from illness and thriving on a new blended diet that includes whole foods like homemade meatballs and spinach, all delivered through her feeding tube.
But perhaps the biggest milestone is just around the corner: Margot is starting school.
“It still feels surreal,” Vicks says. “When she was a tiny baby with her tracheostomy, I never imagined she’d even go to nursery – and now, she’s going to school!”
It’s a huge step for Margot, who will have specially trained teaching assistants by her side to meet her medical needs. But it’s also a huge step for the family, who only a few years ago couldn’t imagine this kind of future.
“With medically vulnerable children, you get so used to never looking past the week you’re in. Nursery opened a door – and now school is another milestone I never thought we’d reach.”
Through all of these milestones, Jessie May has remained a steady presence – providing care, companionship, and a break for a family who otherwise never stops.
“That support has just become part of the fabric of our lives,” says Victoria. “We look forward to it. It’s not just about medical care anymore – it’s time for us to breathe, to rest, to be.”
For Margot, who is non-verbal, her reaction to seeing the familiar purple Jessie May T-shirt says it all. “Her whole face lights up,” says Vicks. “She spins with excitement. She knows she’s going to have fun, get attention, and just enjoy being a child.”
That time is precious. In a life filled with hospital appointments, operations and medical procedures, Jessie May visits are different. They’re about joy, play and presence. They bring lightness to heavy days. And when crisis strikes, they’re there too – a reassuring constant in the toughest moments.
“If we didn’t have Jessie May, it would have a genuine and significant impact on all of us,” says Vicks. “Margot would miss the one-on-one time and connection, and we’d lose that time to step back and catch our breath. Even her sister Mimi finds comfort knowing Jessie May are there – it reassures her too.”
“Outside of medical intervention, Jessie May has been the single biggest positive impact on our lives.”
“We’d like to thank everybody at Jessie May for the support that we have received.” Greg says. “As a family we have benefitted hugely, and we love the interaction and engagement that you give us and the benefit that you give to Margot. So, thank you from everyone at the Griffiths family, keep up the great work and we just hope that other families get to benefit and appreciate the support that you’ve given us.”
It’s moments when we get to speak to families when we can truly recognise the power of compassion and the difference it makes in the lives of families like the Griffiths. We really can make a lasting impact on the lives of those who need it most.
The reality is that many families like the Griffiths are living without this kind of support – and that’s why Jessie May’s work is so vital.
“We’re lucky,” Vicks says. “We’re supported. But we know so many other families just like ours who aren’t – and who are struggling, especially now care costs are rising. It’s hard to imagine how they cope.”
At a time when the cost of delivering care is rising and funding is under threat, the support of the local community is more important than ever.
Every child deserves the chance to smile, to feel safe, and to just be a child.
And every family deserves to know they’re not in this alone.
