How Zoe’s Place Supports a Brave Little Girl and Her Family
We are privileged to care for many incredible children and their families. One of these amazing children is Florence Swaffield, known lovingly as “Flory Bear” to her family and friends. Florence has CLN2 Batten Disease, a rare neurodegenerative condition that affects her brain, vision, and central nervous system. Due to a faulty gene, Florence’s body cannot produce an essential enzyme that keeps her brain and visual cells healthy. This leads to seizures, loss of mobility, cognitive decline, blindness, and other heart-breaking symptoms. Tragically, children diagnosed with CLN2 Batten Disease have a life expectancy of just 6-12 years.
Florence’s journey is a difficult one, and caring for a child with profound health needs can be overwhelming. That’s where Zoe’s Place Baby Hospice comes in. We are proud to provide respite care for Florence, offering her a safe and comforting environment where she feels at ease. For Florence’s family, Zoe’s Place is a vital lifeline that allows them to take a much-needed break from their 24/7 caregiving responsibilities.
“Florence no longer wants to leave the house; it’s just too stressful for her,” her mother Phoebe shares. “We are often bound to the house during weekends and school holidays. Florence feels safe at home, at school, and at Zoe’s Place. When she is here at Zoe’s, we can take our 12-month-old out to visit family, go swimming, or attend birthday parties. Although we miss Flory so much when she is there, these days are absolutely treasured to have a sense of ‘normality’ even if it is just for 24 hours. “I can honestly say, we pick up Florence from Zoe’s as better parent carers than we were when we dropped her off“
Caring for Florence involves constant medical appointments, her enzyme therapy treatments, and the demands of raising a baby. Zoe’s Place offers Florence’s family not only physical respite but also emotional support, helping them feel refreshed and ready to continue caring for their little girl.
In 2022, one year after Florence’s diagnosis, her family started Flory’s Annual Golf Day as a way to raise money and awareness for children living with CLN2 Batten Disease. Since then, it has become a wonderful celebration of Florence’s life, and a way for her family and friends to give back to the charities that have supported them through their journey.
In 2024, Flory’s Golf Day raised over £13,000 for Zoe’s Place Baby Hospice. In total, through various fundraising efforts, Florence’s supporting community has raised more than £23,666 for the hospice. We are incredibly grateful for their ongoing support and commitment to helping us continue to provide care for children like Florence. At Zoe’s Place, we are honoured to be part of Florence’s journey and to provide her with the love and care she deserves. Families like Florence’s inspire us every day with their strength and determination, and events like Flory’s Golf Day remind us of the power
If you would like to support Zoe’s Place or learn more about the work we do, please visit our website or join us at our next fundraising event. Together, we can continue to support children and their families to live life to its fullest.
