Toby is one in 25,000: Littleport parents want their son with dwarfism to be treated as a normal boy as he prepares to start school
- Credit: Archant
A Littleport couple have appealed for their son – who suffers from dwarfism- to be treated like any other child when he begins school later this year.
Tracy and Sarah Kennedy’s son, Toby, was born with achondroplasia – a form of dwarfism that affects one out of every 25,000 births.
Achondroplasia is the most common form of dwarfism, and affects bone growth, making those with the condition grow to around four feet in adulthood.
It can also impair hearing, eyesight, breathing and speech, and three-year-old Toby attends seven different clinics that assess his development.
His parents have also had to drastically alter their lifestyle to cater for Toby’s needs.
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His mother, Sarah, said: “Tracy has altered a lot of the stuff in the house so that Toby can use it.
“We’ve had a special lowered banister put up along the stairs by the occupational health therapist, steps put into the bath so he can get in and out and we’ve lowered all the furniture so it’s more accessible.
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“Tracy’s getting round to putting the door handles lower down too, so Toby can eventually use them when he’s old enough. It’s been a long process, but it’s worth it knowing that we’ve made his life easier.”
Toby is preparing to move from nursery and his parents are hoping that children at Littleport Primary School, where he will start in September, will be as receptive as the children at Stepping Stones Pre-school.
“It took him a while to come out of his shell at nursery, but now he’s really enjoying it,” Sarah said.
“Some of the girls hold his hand and treat him like a baby, which is fine because of his age. People are generally very accepting of him because he’s so young.
“We don’t want to have to feel like we have to wrap him up in cotton wool. We want him to get along with everyone and live happily in a big world.”
Toby and his parents also regularly attend Little People UK meetings – sessions organised so those with dwarfism and their families can get together and share their experiences – and his parents say that hearing other insights has been valuable in supporting Toby as he gets older.
“We’ve met and spoke to a lot of other parents, and it’s been good for us to share what it’s been like with Toby,” Sarah said.
“We go to quite a few meetings every year, and we’ve seen Warwick Davies there too.”
Despite Toby looking different to the majority of school children, his parents want people to be more open about the topic of dwarfism, and ask questions, rather than see it as a taboo topic.
Mrs Kennedy said: “We get a lot of other children asking their parents about Toby and some people might see that as rude, but we want to make it all more understandable, both for them and for Toby.
“We just want people to treat children with dwarfism as normal children, and we don’t want people to be afraid to ask questions – we’re approachable.”
Toby, who is a big fan of dinosaurs, is set to celebrate his fourth birthday this month, and his parents are planning something special.
“We’re taking him to the Dinosaur Adventure Park in Norfolk,” Tracy said. “He doesn’t quite understand it all yet, so it’ll be a big surprise for him.
“He loves dinosaurs, and he’s a massive fan of cars and bikes too. He’s got his own little car and police bike, and he loves sitting on my bike – he always shouts ‘broom broom!’”