Just4Children are raising funds to cover vital physiotherapy, hydrotherapy, intensive therapies and specialist accessibility equipment to give Liwsi the best chance of independence and quality of life.
My daughter Liwsi was born on 31st October 2023. Like many newborns who arrive needing a little extra support, she spent her first days in the NICU receiving help with her breathing and feeding.
During those early days, a routine chest X-ray showed something unusual, Liwsi had 11 sets of ribs instead of the usual 12. Doctors reassured us that this alone wouldn’t cause her problems, but they suggested genetic testing just to be safe.
Three weeks later, we received the news that would change our lives forever. Liwsi was diagnosed with two extremely rare genetic conditions — Cri du Chat syndrome and an Xq28 duplication translocation.
Both conditions are rare on their own, but having the two together is so rare that Liwsi is currently believed to be the only known child in the world with this exact combination. Because of this, there is very little research or information available about how these conditions will affect her as she grows.
Leaving the hospital that day, we felt completely overwhelmed, frightened and incredibly alone.
Since then, our journey has been filled with hospital stays, specialist appointments and therapies. The children’s ward has become somewhere we know all too well.
Liwsi lives with global developmental delay, milestone regression, learning difficulties, low muscle tone and respiratory challenges, to name just a few of the difficulties she faces.
Yet despite everything, Liwsi continues to light up every room she enters. She approaches life with determination, joy and the most beautiful smile. At just two years old, she has already faced more than most people will in a lifetime — and she continues to show us every single day how strong she is.
How fundraising will help Liwsi
Every pound raised will go directly towards therapies and support that help Liwsi move, grow and experience the world more freely.
Private Physiotherapy – £300–£350 per month
Liwsi attends weekly private physiotherapy which focuses on strengthening her muscles, improving posture and supporting her development. Since starting this therapy in April, Liwsi has already shown a 55% improvement in her movement and posture. Continuing this therapy is essential to help maintain and build on this progress.
Specialist Lycra Suit – £600–£700 every 3 months
Liwsi also benefits from a specialist lycra support suit, designed to help stabilise her core, improve posture and support her movement throughout the day. As Liwsi grows, these suits need to be replaced regularly, usually every three months to ensure they continue providing the right support and fit correctly.
Osteopathy – £120–£170 per month
Liwsi receives osteopathic treatment to help relieve stiffness and pain in her hand, where her fingers can sometimes lock and stop her from grasping toys or exploring the world around her. This therapy helps reduce discomfort and supports her ability to use her hands more functionally.
Hydrotherapy – £130–£150 per session
Hydrotherapy has been incredibly beneficial for Liwsi. In the water she can move in ways she simply cannot on land, giving her freedom, comfort and confidence. Although she previously accessed this through the NHS, long waiting lists mean sessions are often very far apart. We hope to provide regular monthly hydrotherapy privately so she can continue benefiting from it.
Feeding Therapy – estimated £10,000
As Liwsi grows, specialist feeding therapy will be essential to support her safety, nutrition and independence. This therapy will help her learn to manage food safely and reduce the risks associated with swallowing difficulties.
Even everyday family experiences come with added challenges. Something as simple as travelling together can require specialist travel insurance costing £600–£800, making things many families take for granted far more difficult to access.
Liwsi is local to Carmarthenshire, Cefneithin in Wales.
With your support, Liwsi’s journey is filled with more hope, opportunity and love.
Thank you
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