Family and friends raise £5500 to buy trike for Hurler syndrome sufferer
Learning how to ride a bike is a rite of passage for most children and cycling a pastime enjoyed by many youngsters.
Unfortunately for those who suffer from debilitating conditions, such as brave Falkirk girl Chiara Petersen Fox, the physical effort involved simply makes cycling too painful.
Nine-year-old Chiara was born with Hurler syndrome, a rare lysosomal storage disease with no cure. It is characterised by skeletal abnormalities, cognitive impairment, heart disease, respiratory problems and reduced life expectancy.
However, due to her battling spirit and can-do attitude, Chiara would often give cycling a go and even refuse to travel in a wheelchair if she deemed a distance to be walkable. Chiara was also born deaf and has undergone spinal surgery, bilateral hip reconstruction and two bone marrow transplants in an attempt to slow the disorder down.
The Moray Primary School pupil’s determination and positive outlook on life has had such an impact on her family and friends that several of them pulled together last Halloween to raise £5500 and pay for a specially adapted trike that allows Chiara to wheel around pain-free and ensures she doesn’t miss out on one of her favourite activities.
Family friends Linda (46) and Emma Davis (20) arranged a fundraising night at Grangemouth Town Hall in aid of the youngster which generated the four-figure sum — a touching gesture which Chiara’s mum Michelle Petersen (46) has described as “amazing”.
Built a few months ago, Chiara has now got to grips with her new trike and her family couldn’t be more proud of their little star — who also enjoys playing football and dressing up as a fairy.
Mum Michelle, a patient relations officer at Forth Valley Royal Hospital, said: “The event was a sell-out and the amount raised was fantastic.
“What Linda and Emma did was amazing.
“Chiara’s doing really well. The condition she has affects every part of her body.
“Chiara’s had bilateral hip reconstruction, eight plates in her knee and wears a spinal brace.
“She needs a wheelchair for going any distance but refuses to use it and can’t quite get the balance on a normal bike because of this brace.
“Linda figured this trike would give her independence.
“She got it about May time and we’ve been using it through the summer to get her used to it.
“We turn the pedals off when she gets tired and push it.”
Michelle continued: “I want to say a massive thank you to everyone who supported us because it has made such a difference, even being able to take her away on holiday to Portugal.
“She gets so much joy from the trike.
“She can go on it without the sprinal brace because it has that support built in.
“Unfortunately Chiara’s life is going to be short-lived but hopefully she will have years and years of enjoyment to come.”
Grangemouth woman Linda said: “It’s fantastic seeing Chiara on her trike. It’s given her a new lease of life and her independence.
“It was my daughter who organised it. Emma was inspired by the fight that Chiara has had since she was born. She’s a character and we wanted to do something for her.”