When Tilly‑May was born, her family were told she might not reach her first birthday. She arrived with extensive and complex brain abnormalities, and over time was diagnosed with an exceptionally rare condition called tubulinopathy. Doctors warned she would never reach adulthood – yet today, she is approaching her 20th birthday.
Her life has been shaped by countless medical challenges: severe epilepsy, unsafe swallow, blindness, cerebral palsy, scoliosis, cortisol deficiency, pancreatitis, and daily reliance on oxygen and BiPAP. She needs two‑to‑one care around the clock, and every day brings a new set of challenges. As mum Jenny says, “It is a daily battle.”
But through every stage of her childhood, one constant was the support of Jessie May nurses.
A Lifeline of Care at Home
Jessie May first came into the family’s life when Tilly‑May was around two years old. For the next 17 years, our nurses became part of their world offering specialist clinical care, emotional support, and the much‑needed breaks that helped the family keep going.
For Jenny, those visits meant everything.
“They’re lifesavers, to be honest. It meant I could hand over the reins and just have a bit of me time.”
Because Tilly‑May is blind, continuity was vital. She recognised her nurses by their voices, their touch, their smell. Her face lit up when she heard them arrive. And she loved their chatter – “If they had any juicy gossip, she’d wake up smiling,” Jenny laughs.
The support wasn’t only clinical – the nurses became very trusted friends.
“They become your extended family,” Jenny says. “I miss them so much. And I know Tilly‑May does as well.”
Graduating From Jessie May
When Tilly‑May turned 19, she graduated from Jessie May’s service – a moment filled with both pride and sadness.
Jenny chose her 19th birthday for the final visit.
“It was lovely,” she says, “but I’m not going to lie, I feel very lost without them.”
The absence is felt every day.
“Once that service has gone, it’s gone… and there’s nothing like it.”
Yet Jenny remains incredibly grateful for the role Jessie May played in her daughter’s life.
“All of these people have been part of Tilly‑May’s journey. They are partly responsible for getting her to this age. It’s not just me.”
Her door, she says, will always be open: “If they’re ever over this way, they know they can come in for a cup of tea, coffee, slice of cake. I’m still in touch with some of the nurses and it means a lot.”
A Prom to Remember
Last year, Princess Tilly‑May had her prom – a moment Jenny describes as “amazing”, and one that felt even more significant because it came so soon after graduating from Jessie May.
Dad Rich, Mum Jenny and Tilly-May
Brother Ben, Sister Emily, Brother Dylan & Tilly-May
Because she uses a wheelchair, the family travelled in their car, escorted by a group of bikers organised by her dad, Rich. “They said it would be a privilege and honour to escort her,” Jenny recalls. The sight of the bikes surrounding their car, guiding Tilly‑May to her prom, is a memory the family will treasure forever.
Tilly‑May stayed awake the entire time, something rare for her, taking in every moment. She wore a beautiful prom dress, surrounded by her loving family, and for that evening, everything felt possible.
For Jenny and Rich, it was more than a school milestone. “She’s never going to be able to get married or anything like that, so it wasn’t just special for her – it was nice for us, especially her dad.”
It’s moments like this that Jessie May are so proud to see a child able to experience – these milestones mean the world. And as Jenny said, the nurses have been a huge part of getting Tilly‑May to where she is today. Their support doesn’t just make days like prom possible; it’s only when that support ends that families truly feel the difference and realise just how much the nurses carried with them.
Tilly‑May’s story is extraordinary – not only because she has defied every medical expectation, but because she has been held by a community of people who refused to let her journey be walked alone.
For nearly two decades, Jessie May nurses stood beside her and her family. They supported her through childhood, celebrated her milestones, wiped Jenny’s tears, and became woven into the memories that will stay with them forever.
And it’s only when that support ends, when families suddenly have to manage without it, that the true impact becomes unmistakable. The absence is felt in the everyday moments, and in the big ones too: the birthdays, the hospital stays, the school milestones, the prom nights. The nurses made those moments possible too.
“The friendships we’ve made along the way… I treasure them with my life,” Jenny says. “The memories we have made with them over the years have been amazing.”
Tilly‑May’s journey is a testament to resilience – hers, her family’s, and the nurses who cared for her with such dedication. It is a reminder of the difference compassionate, specialist care makes. And it is a celebration of a young woman who continues to defy every expectation.
