Lottie’s Story – Finding Support, Strength and Hope at Little Lights Liverpool
When Kirsty and Fran welcomed their second daughter, Lottie, in 2021, everything seemed to be going exactly as they had hoped. Following a healthy pregnancy and birth, they expected their youngest daughter to reach the same milestones as her older sister, Lilly.
But as the months passed, Kirsty began to notice that Lottie’s development wasn’t following the same path.
A Life-Changing Diagnosis
What followed was a difficult and uncertain journey.
During the COVID-19 pandemic, accessing healthcare was challenging, and Kirsty often faced appointments, hospital visits and tests on her own. Month after month, the family searched for answers.
Eventually, they received devastating news.
Lottie was diagnosed with a missing chromosome, brain damage that resulted in level five cerebral palsy, and an absent corpus callosum, the part of the brain responsible for communication between the two hemispheres.
Today, despite being two and a half years old, Lottie’s development is similar to that of a six-month-old baby. She cannot sit, crawl, stand or walk independently, and she has very limited use of her arms. Even holding her head up can become exhausting, and she has no way of communicating her needs.
“We have to do absolutely everything for her,” says Kirsty. “She’s like a six-month-old forever.”
The Reality of Everyday Life
For Kirsty and Fran, everyday activities that many families take for granted have become significant challenges.
Simple tasks such as grocery shopping, family outings or bedtime routines require immense planning, patience and care. When Fran is working night shifts, the responsibility often falls solely on Kirsty.
“Bedtime on my own is so hard,” she explains. “It can take up to two hours to settle Lottie because she’s in pain in bed due to her dystonia. There’s just no right way to do it whatsoever.”
The constant demands of caring for a child with complex needs can be physically and emotionally exhausting. Finding moments to rest, recharge and focus on the wider family became increasingly important.
That’s when they discovered Little Lights Liverpool.
Finding a Place That Feels Like Home
In September 2023, Lottie began attending Little Lights Liverpool, a specialist baby hospice providing expert care and support for children with life-limiting and life-threatening conditions.
For Kirsty, the difference was immediate.
“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.”
What the family found was so much more than respite care.
At Little Lights, families are supported as a whole. Alongside specialist nursing care, they can access counselling, therapeutic activities, family events and opportunities to create precious memories together.
Most importantly, they found a community that understood.
Support for the Whole Family
The emotional impact of caring for a child with complex needs can be overwhelming, and Kirsty says the support available through Little Lights Liverpool has been life changing.
Counselling sessions have provided a safe space to talk openly about the challenges the family faces.
“The sessions have been invaluable. It’s been amazing because there’s no one else to turn to really.”
The physical demands of caring for Lottie are significant too. Carrying and supporting her throughout the day has taken a toll on Kirsty’s body, but therapies available through Little Lights, including back massages, have helped ease some of that strain.
For Lottie herself, one activity stands out above all others: hydrotherapy.
“She’s in pain a lot with her muscles, but the heat of the pool helps her relax.”
Watching her daughter enjoy those moments brings Kirsty enormous comfort.
“Everyone’s amazing. She has the best smile, even with all the pain and frustration she must be feeling.”
Making Childhood Count for Lilly
Little Lights has also become a special place for Lottie’s big sister, Lilly.
As the sibling of a child with complex needs, Lilly naturally takes on responsibilities beyond her years.
“She is like a little carer, really. She helps us an awful lot and is really understanding.”
Through sibling days at Little Lights, Lilly has the chance to meet other children who understand her experiences, helping her realise she isn’t alone.
“I like her knowing that it’s not just her.”
These opportunities give Lilly the space to simply be a child, while also helping her build friendships and confidence alongside others who share similar family circumstances.
Creating Precious Moments Together
Perhaps one of the greatest gifts Little Lights Liverpool gives the family is time.
When Lottie is receiving specialist care, Kirsty can spend dedicated one-to-one time with Lilly, doing things that would otherwise be difficult to manage. Sometimes, it’s the simplest moments that mean the most. A trip to the swimming pool. An afternoon together. Time to focus on being mum to both daughters.
For Kirsty and Fran, Little Lights has become far more than a hospice. It’s a place of understanding, support and belonging. A place where Lottie is known, cared for and celebrated, and where the whole family can find strength to face each new day together.
“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.”