A DARWEN mum has told how her family overcame adversity when her daughter was diagnosed with a rare genetic disorder.
Kia Shaw, 15, was born with Shwachman-Siamond Syndrome (SDS), which affects the pancreas, bone marrow and skeleton.
She was diagnosed with cirrhosis (scarring) of the liver at three months and she was completely immune suppressed and pancreatically insufficient.
She defied the odds by reaching the age of five, as most children with the condition live just three months, and she wasn’t diagnosed with SDS until she was seven. Eight years on and the St Wilfrid’s High School pupil still has problems with the bones in her legs and has had numerous operations.
The diagnosis changed the lives of mum and dad, Carol and Dean, and brother Braydon, an apprentice footballer at Bury FC.
But they were given support by the Rainbow Trust, which celebrates siblings and raises awareness of the impact of having a seriously ill brother of sister can have.
Carol said: “Kia’s brother Braydon’s dreams are to play football and I didn’t want anything to get in the way of that. I wanted him to be able to lead as normal a life as possible and I wanted to help him achieve his dreams.
“Our family support worker Carol, from the Rainbow Trust, would sometimes take him to and from his football practice when I was unable to because of Kia.
“But more importantly, she would spend time with Kia, which meant I had time to spend with Braydon.”
Carol and her husband Dean also lost their home after being unable to pay the bills because of £90 weekly costs of travelling to hospital.
Children’s charity the Rainbow Trust offers practical and emotional support to families in the Shaws’ situation.
Carol said: “For the first time in years I wasn’t alone.
“I honestly cannot thank Rainbow Trust enough for coming in when they did because I don’t know what would have happened if I’d actually gone through a breakdown.”