In 2021, Kirsty and Fran welcomed their second child, Lottie. Following a normal pregnancy and birth, Kirsty began to notice differences in Lottie’s development compared to her older sister, Lilly.

After many months of tests and investigations, all against the backdrop of a national lockdown, Kirsty was able to start to understand Lottie’s condition. The diagnosis revealed dual conditions: a missing chromosome, which is still under investigation, and brain damage resulting in level five cerebral palsy. Additionally, Lottie lacked a corpus callosum, causing her brain’s hemispheres to function independently.

Lottie’s diagnosis left Kirsty feeling emotional and isolated. Amidst this turmoil, the family discovered Zoe’s Place, a baby hospice providing specialised one-to-one care for children with life-limiting and life-threatening conditions.

At two and a half years old, Lottie’s abilities mirror those of a six-month-old. Kirsty heartbrokenly reveals Lottie is ‘like a six-month old forever’. Kirsty and her family found themselves navigating uncharted territory, facing the complexities of caring for a child with profound needs; ‘she still can’t sit, crawl, stand, walk or even use her arms independently. Her head tires easily, so she drops, and she has no way of communicating. It means we have to do absolutely everything for her’.

For Kirsty, day-to-day tasks are ‘becoming impossible’, trips to the local supermarket have changed forever, as has bedtime. Kirsty says, ‘Bedtime on my own, due to Fran’s shifts, is so hard. It can take up to two hours to settle Lottie as she is in pain in bed due to her dystonia. There’s just no right way to do it whatsoever. I am always so relieved when Lottie’s respite falls on Fran’s night shifts as it’s one less night of struggling.’

In September 2023, Lottie started visiting Zoe’s Place and the family has never looked back. At Zoe’s Place, Lottie’s family found more than just medical care. They found a community that welcomed them with open arms. ‘As soon as you walk in, everyone’s really friendly and welcoming. And it’s so nice that everyone knows her…and everyone actually cares.’

Beyond offering respite, Zoe’s Place provides holistic therapies, counselling, and special family and sibling days. Kirsty found additional support through counselling sessions, ‘Zoe’s Place have been really good, as now I’m having counselling, the sessions have been invaluable. It’s been amazing because there’s no one else to turn to really. We come for the [holistic] therapies, I get a back massage because my back is wrecked, it’s so physically draining holding her all day.’

Hydrotherapy at Zoe’s Place is one of Lottie’s favourite sessions. The warmth of the water provides much-needed relief for her dystonia, easing the tension in her muscles and offering a break from the pain she so often endures. ‘Everyone’s amazing,’ Kirsty shares, reflecting Lottie’s joy in the company of the caring staff. ‘She does love seeing everyone. She loves the hydro. She’s in pain a lot with her muscle, the heat of the pool does help relax her so it’ll do her the world of good.’ Lottie always has a smile for everyone, Kirsty explains: ‘she has the best smile even with all the pain and frustration she must be feeling.’

For Lilly, Lottie’s older sister, Zoe’s Place offers a sense of belonging and understanding. Sibling days allow Lilly to connect with others facing similar situations while relieving some of the burdens placed on her young shoulders. ‘She is like a little carer really, she does help us an awful lot and is really understanding. So I like her knowing that it’s not just her… in a situation like this it’s nice for her to know that other children are going through the same.’

The impact of Zoe’s Place extends beyond emotional support. When Lottie is at Zoe’s Place, it enables Kirsty to spend time with Lilly and do activities she can’t when with Lottie. Kirsty explains, whenever Lottie is at Zoe’s Place,

‘I say, oh, we can go swimming’. So it does make a big difference to Lil because I feel so sorry for her, like she’s missing out all the time.’

Through its facilities and compassionate staff, Zoe’s Place became a lifeline for Kirsty’s family, offering a haven where they could find understanding, assistance, and moments of respite amidst their challenging journey. They don’t get support anywhere else, so that is ‘why Zoe’s Place is now even more valuable because there truly is no one else.’