Kennedy's Story
Kennedy Mercer was five months old when a rare genetic condition claimed the life of her twin brother Karter. Kennedy has the same condition, Spinal Muscular Atrophy Type 1. Both twins were diagnosed with the disease before turning six-months-old. Babies with it usually die within two years, often as a result of serious breathing difficulties,... Read More
Tilly's Story
"Our little girl Matilda, Tilly, was diagnosed with Rett Syndrome in March 2018. Tilly had developed normally until she was one, with no concerns whatsoever, but then started to gradually lose her skills. Rett is a rare genetic neuro-developmental condition affecting mainly girls leaving them profoundly disabled. Rett means Tilly cannot walk, talk, use her... Read More
Jacob's Story
When their baby son Jacob was diagnosed with a life-limiting genetic disorder parents Gemma and Kevin Rimmer knew their world had changed forever. Gemma, from Liverpool, says: “We realised our gorgeous boy would need 24-hour care. I had to give up work as a hairdresser. Kevin had to leave a good job on the railways... Read More
