Liwsi's Story
Liwsi's family visited the Lodge in February 2026
We are a family of four, navigating life with our beautiful two-year-old daughter, Liwsi, who has two rare genetic conditions – Cri du Chat syndrome and an Xq28 duplication translocation. Both conditions are life-limiting and life-threatening, and they bring significant daily challenges.
Liwsi faces more in a single day than many will in a lifetime. She is developmentally delayed with complex learning difficulties, is non-verbal and immobile, and is fed via a gastrostomy tube due to an unsafe swallow. She battles severe secretions, respiratory complications, chronic sleep difficulties and is currently awaiting further specialist referrals and upcoming surgeries. Our days revolve around medications, feeding equipment, emergency supplies and careful planning. We can’t travel far from a hospital, every outing requires disabled access and parking, and we carry what feels like half a hospital with us wherever we go.
As a family, life requires military-level organisation and constant vigilance. But despite all of this — Liwsi is the happiest, most joyful little girl. She absolutely adores music, dancing, watching Ms Rachel, and being surrounded by her family. She lives fully in every moment, and because of her, so do we. We truly live each day as if it could be our last, choosing memories over everything else.
Our eldest daughter, Alys, carries more than most children her age should. Watching her sister’s medical complexities has been emotionally challenging for her, and she often shows signs of what many call “glass child syndrome.” Yet she is the kindest, most caring big sister. She loves Liwsi fiercely and is endlessly proud of her.
The opportunity gifted to us by the Ben Saunders Foundation means more than words can express. Families like ours don’t often get to just be a family. This holiday gives us precious time to breathe, to laugh, to reconnect, and to create memories together — memories that will last a lifetime.
From the bottom of our hearts, thank you for giving us something so incredibly special.