Zeniah is a loving, sociable little girl with a rare genetic condition called Mowat-Wilson Syndrome, which affects many aspects of her daily life.
Despite everything she has faced, her mum Dana says her personality shines through, and one of her most remarkable qualities is her kindness.
“She has this innate sense of knowing when people need affection. 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.”
But behind her bright smile is a little girl who has faced challenges most adults would struggle to imagine.
Zeniah underwent heart surgery at just four weeks old and has since endured multiple emergency procedures. She experiences seizures, has developmental delays, needs support with feeding, tires very easily and relies on a wheelchair when out and about.
Her care needs are complex and ongoing, requiring round-the-clock support from her parents, Dana and Marc. Her older sister, Kirianna, also plays an important role in her life, always looking for ways to support and include her little sister. Caring for a child with such complex needs can be physically and emotionally exhausting, leaving little time for rest, family life, or simply being a parent rather than a full-time carer.
Since Jessie May entered their lives, it has been life-changing for them. For a family whose daily life is shaped by complex medical needs, specialist care at home has been transformative.
“It’s lovely,” says Dana. “They’re such lovely people. You feel like you’ve got extra people in your corner.”
“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 has helped build trust and confidence, giving the family opportunities to focus on moments that otherwise might not be possible.
One memory stands out for Dana. She had been invited to watch Kirianna perform in her school concert; something she would usually have had to miss because of Zeniah’s needs.
“Nurse 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.”
For Dana, it’s these moments that really matter and that’s what Jessie May’s support is all about.
That support is especially valuable at Christmas.
Mum Dana shares what Christmas is like for them…
Christmas looks different for every family, and sometimes the traditions we’ve held onto for years need to change and adapt as life changes around us.
We’ve learned to do Christmas our way. We wake up and do stockings in bed, have clues on our gifts to each other and a nip of Bailey’s in our morning coffee. I cook Christmas dinner in my pyjamas and it’s never on time. We play silly games, get far too competitive and enjoy the Strictly Christmas special.
Some things have changed over the years. We used to love singing Christmas songs together, but this can be a trigger for Zeniah, so we’ve adapted and now simply play Christmas music instead. Busy Christmas markets and concerts are things we’ve had to let go of too. Having friends and family over can be challenging, and changes to routines can be especially difficult for Zeniah to manage.
To the outside world these things might seem insignificant, but when your days are built around routine, predictability and helping your child feel safe, even the smallest changes can feel enormous.
For Christmas, even choosing toys and gifts can be difficult. We often find ourselves buying the same things year after year because Zeniah’s development hasn’t advanced in line with her chronological age. It’s a reminder that Christmas, and the expectations that come with it, can look very different for our family.
But we’ve learned to adapt, to let go of some traditions and create new ones that work for all of us. If that means me driving around the Asda car park on Christmas morning listening to Heart Christmas just to tick it off Zeniah’s list, then that’s exactly what we’ll do.
Our Christmas might not look like the Christmases we see in films or on social media, but that doesn’t make it any less special. We are blessed to spend Christmas with the people we love, in a warm and safe home, with food on the table and love at the very centre of everything we do.
And when we strip away the expectations, the traditions and the pressure to make Christmas look a certain way, perhaps that’s what it has always been about.
Our Christmas is different, but it is ours. And for that, we will always be grateful.
Throughout it all, Jessie May has been there alongside us. Their support has helped us make the most of our time together as a family, creating space for those moments that matter and helping us enjoy Christmas in a way that works for us.
When they visit around Christmas time, it gives me the chance to get organised for Christmas so we can make the most of every moment together. It also allows me to spend time with Kirianna or the nurse can simply enjoy making memories with Zeniah. She lights up when they come to the house and loves spending time with them, and knowing she’s happy allows me to focus on being Mum rather than a carer.
These are the moments Jessie May helps create. The moments that make Christmas feel possible. The moments families like Zeniah’s hold onto, year after year.
This Christmas, your kindness can help families like Noah’s enjoy the festive season in their own way, with less worry and more precious time together.
Give the gift of care. Help Jessie May be there for families who need us – at Christmas and beyond.
Read more about Zeniah here – Zeniah’s Story – Jessie May – Hospice Care at Home
