Sophie and Sean were just 22 when their little son Ollie was diagnosed with the ultra-rare MOSAIC Syndrome. Here Sophie shares their story and explains how Tŷ Hafan is, quite literally, a lifeline for the whole family.
Jaiden, 14, has counselling and music therapy with Tŷ Hafan and all from the comfort of his own home in Llandrindod Wells. Here, he and mum, Anne-Marie, share their story and explain what Tŷ Hafan means to them.
My name is Sarah and I am Mum of two beautiful girls Molly and Emily who both have Rett syndrome.
Harley, a “cheeky chops” seven-year-old from Llanelli, is definitely one of a kind. He had his first operation on a cystic lung when he was still inside his mum Becca’s tummy and at two days old, he had open surgery to remove most of his left lung.
Just hours after Osian Liddlell was born, his parents' joy turned to fear, as their precious baby boy was transferred to the neo natal intensive care unit. A rash had spread across his face and body and doctors immediately started carrying out tests to find out why.
When baby Riley came into the world 7 years ago, his parents couldn't wait for him to meet his three older brothers. But as soon as Riley was born, his parents knew something wasn't quite right.
Sisters Molly and Emily bring so much joy and love to their mum and dad's lives, but since they were born, life is not how their parents James and Sarah ever expected it to be. Both girls were born healthy babies two years apart but as time went on, their parents noticed their daughters weren't developing as they should be.
Doctors diagnosed Lilly-May with Leukodystrophy, a life-limiting brain condition that affects the central nervous system, which is responsible for nearly everything we do from our heartbeats to walking.
Luca Pucella was a happy, energetic little boy with an infectious laugh, a wicked sense of humour and a tremendous zest for life. He brought love and joy to the lives of his family, his friends and everyone who knew him. But something made Luca different to other boys. He suffered from a rare, life-limiting condition, and in November 2017, when he was just eleven years old, Luca passed away.
When Dan and Alex's baby son Felix was just a few months old, his parents received the devastating news that their little boy had a life-limiting condition and would never walk, talk or even live past infancy.
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