Get involved! Send your photos, video, news & views by texting COUNTY GAZETTE to 80360 or email us
Mum and dad's battle for Sophie
THE parents of a baby with one of the rarest conditions in the world are battling to increase awareness.
Ten-month-old Sophie Hooper, of Monkton Heathfield, is one of only four children in the UK with rhizomelic chondrodysplasia punctata, a life-limiting form of dwarfism.
Sophie, who is unlikely to live beyond childhood, weighs just 10lbs, and has extremely short arms, a hole in her heart, a weak immune system, brain dysfunctionality and muscle problems meaning she cannot move her hands unaided.
She will probably never walk, talk or feed herself but despite everything she is always happy.
Her father, Craig, of Priorswood, who is separated from Sophie’s mum, Stephanie Baker, said: “The last case in Somerset was 20 years ago, and the doctor treating her knew nothing about RCDP and got the information on-line.
“Children with RCDP have a short life span – the average is four and the oldest recorded is 22.
“There are only about 50 cases worldwide.
“Within herself you wouldn’t think Sophie was any different to other children – you’d just think she was younger than she is.
“She’s so happy – she giggles and laughs a lot.”
Craig and his friends are organising several fundraising events, including next April’s Taunton Half-Marathon and a football tournament this Saturday (August 18) in aid of RhizoKids UK, which aims to raise awareness and funds for research, and support families of children with RCDP.
He said: “My quest is to let people know about RCDP.
“We discovered when Sophie was four days old – it’s a genetic condition.
“When I heard I broke down and was shocked because I knew nothing about it.
“I didn’t want anyone to know until I started finding out about the fantastic support available, which has really helped.
“It opened my eyes to thinking what a beautiful baby girl we have and we’re going to enjoy her while we can, taking every day as it comes.”