A story about Zeniah and her family – Mum Dana, Dad Marc and sister Kirianna – and the difference that children’s hospice at home care has made to their lives.
When Dana was pregnant with her second daughter, everything seemed familiar. She’d done this before. But as the weeks went on, something felt different. “I was absolutely huge,” she remembers. Doctors discovered she had polyhydramnios and admitted her for monitoring. Even then, no one expected what was to come.
During labour, baby Zeniah became distressed. An emergency C‑section followed, and for the first few minutes of her life, she didn’t breathe. “It was a bit touch and go really,” Dana says quietly. “Her entrance to the world was a bit skittish.”
What followed was a long stretch in intensive care, where doctors began to uncover the complexity of her needs. They found heart problems, concerns about her facial features, and issues with her bowel. At just four weeks old, she had her first heart surgery. More complications followed – necrotising enterocolitis, fluid build‑ups, emergency procedures. “She was a pretty poorly baby,” Dana says. “But she just kept mending. She kept fighting.”
By the time she was two and a half, life had settled into something that resembled a rhythm, until the day everything changed again. During a nap, Zeniah suddenly began seizing. “Her eyes were just gone, she was completely grey,” Dana recalls. “We nearly lost her.” More seizures followed, leading to an epilepsy diagnosis and further genetic testing.
On Rare Disease Day, of all days, the family finally got an answer: Mowat‑Wilson Syndrome, an extremely rare condition with only around 700 confirmed cases worldwide. It explained her developmental delays, her seizures, her heart issues, and the uncertainty that lay ahead.
“It was a steep learning curve,” Dana says. “We realised life was going to look a little bit different for her.”
Who is Zeniah?
Despite everything she’s been through, Zeniah is full of joy.
“She’s a really loving, really social little girl,” Dana smiles. “She absolutely loves school, she loves her friends. She’s always excited when the Jessie May nurses come too – she’ll show them around the house or take them to the park.”
Her condition means she tires easily, needs support with feeding, and has seizures throughout the day. She can walk short distances with help, but relies on her wheelchair outside. Yet her spirit is unmistakable.
“She has this innate sense of knowing when people need affection,” Dana says. “She’ll wave at everyone. She’ll stop us to talk to people who look like they might need a bit of kindness. She’s just… magic.”
A Sister’s Love
Zeniah’s older sister, Kirianna, has been her champion from day one. Now 12, she has been nominated for a Well Child Award – something that means the world to her.
“She chose her sister as her hero for a school project,” Dana shares. “She said nobody is as brave as Zeniah. That melted my heart.”
She’s run Makaton clubs so people can communicate with Zeniah and others like her, she’s raised money for charities, and created Easter trails for her community. “She’s just brilliant,” Dana says. “And Zeniah absolutely adores her.”
Read more about Kirianna and her support here.
How Jessie May Became Part of Their Team
When the family were referred to Jessie May nearly two years ago, everything changed. “It’s lovely,” Dana says. “They’re such lovely people. You feel like you’ve got extra people in your corner.”
For a family whose daily life is shaped by medical needs, unpredictability and constant vigilance, that support has been transformative.
Dana explains:
“It’s not just about Zeniah. When they come, they listen. You feel validated. They genuinely want the best for the whole family.”
Having consistent nurses, especially Ash and Vicky, has been vital. They know her sounds, her routines, her “little quirky ways.” That familiarity means safety, trust, and the chance for the family to breathe.
One moment stands out for Dana. She had been invited to watch Kirianna’s school concert – something she would normally have to miss because of Zeniah’s needs.
Dana explained, “Vicky said, ‘Don’t worry, I’ll have her straight from school.’ And that meant the world. Kirianna’s little face when I said I could come… she was absolutely buzzing. That couldn’t have been possible without Jessie May.”
Nurse Vicky says she feels just as privileged to support the family:
“Zeniah is such a joy to be around. She’s full of love and mischief, and you can’t help but smile when you’re with her. Supporting her and her family is incredibly special.”
Even small things, like helping the girls enjoy Easter in their own way, become moments of connection. Whether it’s baking, decorating, or simply giving the family space to make memories, Jessie May helps make the everyday feel possible.
There are also the Jessie May family events which the whole family cherishes. For families like theirs, attending events or having days out can be difficult. Busy spaces, noise, and unpredictability can be overwhelming for Zeniah. But Jessie May events offer something different – a space where she can join in safely, happily, and without judgement.
“She absolutely loves the Jessie May days out,” Dana says. “It’s one of the few places where she can just be herself. People understand her. She’s included.”
These events also give the family something rare: the chance to enjoy time together without constantly navigating barriers.
Living, Not Just Existing
For Dana, the difference Jessie May makes is simple but profound:
“It becomes a bit more about living rather than just existing.”
After everything they’ve been through – the surgeries, the diagnoses, the emergencies, the uncertainty – the family has learned to treasure the moments that matter. The laughter. The chocolate‑fuelled Easter egg hunts. The supermarket trips where everyone knows Zeniah by name. The cuddles she gives so freely.
“We don’t know how much time she has,” Dana says softly. “But she makes sure people know she’s here. She’s present. She’s… as I’ve said before, she’s magic.”
And with Jessie May by their side, the family can keep making those moments count.
