After the birth of my first child, my haze of joy and exhaustion was punctured brutally. The medical professionals at the hospital asked us to step into a sideroom. We could tell by their serious expressions it wasn’t good news. In fact, it was every parent’s nightmare.
But this is a story of hope. Our daughter Izzy is now eight years old and in school!
I’m Emma, Izzy’s mum. Our story is one of resilience and joy, and it’s only been possible because of amazing people like you.
Hours after her birth, we were asked to make a huge decision on behalf of our tiny baby daughter. To have a chance at life, Izzy could have an immediate operation, dialysis, and eventually a transplant, or we could simply opt for end-of-life care. We chose to give her a chance at life.
The first 12 weeks in the hospital were tough, with daily and overnight visits. As she stabilized, I could hold her more. I became less afraid of all the medical equipment as she improved.
When we brought Izzy home, she still needed 11 hours on the dialysis machine each night. Transitioning from hospital care to managing everything ourselves – learning to operate the machine, handle medications, and care for Izzy – was overwhelming. That’s when Jessie May stepped in. What many people don’t know – we didn’t until we were in this situation – is that transplants aren’t a cure, they typically only last 10-20 years. So, while Izzy may appear healthy to others – thanks to her kidney donor – she is still monitored every six weeks and is under the care of six different medical teams.
As well as being qualified nurses, the Jessie May team was there to support us and help us navigate this unexpected version of life with our baby. They understood the daily struggles we faced.
With Izzy in school, we don’t see Jessie May nurses as often as we used to. We’re stable and managing now but we’re never really out of the woods. She could deteriorate at any moment. It’s reassuring to know that Jessie May is waiting in the wings for us should we need their care. With Jessie May’s support we were able to find some sort of routine and alongside the anxiety, some unexpected moments of joy.
They can advocate for Izzy’s needs because they know her, they know what is and isn’t ‘normal’ for Izzy.
The consistency and dedication of the Jessie May nurses means they know the children well and can advocate for them – which they do, fiercely!
In her short life, Izzy has been in and out of hospital too many times to count and had multiple operations. It’s during these times that the Jessie May nurses have been a voice for our child. That’s been invaluable.
Jessie May is a charity because less than 20% of its funding is statutory.
Please donate today to help families like ours spend Christmas together at home! Comprehensive medical care, and the advocacy that children like Izzy need comes as standard with a Jessie May nurse. What’s less talked about is the resilience they help to build into families like ours, and the support to siblings of children like Izzy. Giving them a chance to be children.
It costs £450 a day to fund a Jessie May nurse. In that time, our nurses can support two families to experience the precious normality of family life many simply take for granted, and to make lasting memories to treasure forever.
We are so grateful for your previous support of Jessie May. A gift this winter of £15, £30, or £45 from our community of generous individuals could collectively fund a nurse for a whole year, providing the care that every child like Izzy needs and deserves. Please donate whatever you can manage, this winter.
Thank you, in advance, from the bottom of our hearts, for your continued support