“The world is made average, so for him, every time he walks in the door, nothing is accessible,” says the mother of a boy with dwarfism.
Sophia Tabone is a local mother of four “wonderful” boys.
She and her husband, Mike, have lived in Bradford for eight years and she says the family moved to the city so that their eldest son, Christian, could attend school with another child who shares a unique condition with him: dwarfism.
Christian Tabone is 10 years old and in 5th grade. He was born with a condition called achondroplasia, which is a form of dwarfism characterized by disproportionate body parts such as the limbs.
Her mother was 27 when she discovered her firstborn had some form of dwarfism.
“It was a shock, a total shock,” says Tabone, adding that there is no one in her family with dwarfism. “This is the luck of the draw.”
The disease is not inherited and affects only one in 20,000 births. About 80 percent of children with the disease are born to two parents of average height, according to the Little People of Ontario charity.
Tabone explains that raising her three average-sized boys and raising Christian is very different; Christian has many more medical problems and challenges in his day-to-day life than his siblings.
“Getting dressed was a struggle, going to the bathroom… the world has become average, so for him, every time he walks in the door, nothing is accessible,” she says. “He would have a hard time, so we teach him to live and understand things on his own… I don’t treasure him [and] I’m a lot harder on him because when he goes out into the world it’s not for him so he has to figure things out.
When Christian is asked about his height (usually by other children at school or in a public park), he will describe himself as “smaller” or say he is a “small person”, but Tabone says the adults become “fascinated” by Christian, which can be problematic when it comes to understanding his condition.
“It’s mostly adults who are the problem,” she says, adding that sometimes adults will try to take a picture of her son without their consent. “The children will ask ‘why are you the size of a baby?’ They don’t get it, but once you explain it to them, they don’t care and move on. But adults are those who are totally uneducated.
Tabone explains that the numbers help, and with two “little people” at the local school, Christian and his friend are able to promote changes within the school to accommodate their size versus things like the toilets, the door handles and the height of the buttons to open / Close the doors.
Christian plays softball for the Bradford Storm and Tabone was instrumental in removing the term “midget” from the Bradford Minor Baseball Association division titles in 2019.
“The parents in the community have been great – especially the parents from Bradford Storm they are amazing! We have never had a problem and it has never been a problem, ”she shares.
Tabone says that many doctors couldn’t offer her much information about dwarfism when she began to learn more about the disease. So, she connected with a doctor of genetics at Sick Kids Hospital who then put her in touch with the Little People of Ontario Association.
Tabone helps raise funds for the organization while continuing to advocate for Christians and people with dwarfism.
“They terrify you with all these crazy things like ‘he might never have a job or a family, he might never be able to drive’,” she recalls of the doctors. “You CAN drive, you might just need pedal extensions. You MAY have a job, you might just need a stool. You slowly begin to see the light and realize, socially, that he will be fine.
In 2017, Christian participated in the World Dwarf Games in Guelph. He was only six years old, but his mother made sure he could try all the sports available, including bocce, track and field, shot put, soccer, basketball and ball hockey.
In 2019, Christian played baseball at the World Dwarf Games with Team Canada and won gold. He was also named player of the match with the Bradford Ball Hockey League (Simcoe division).
Next year, the family will compete in the World Dwarf Games again and sell Team Christian t-shirts to raise money to send him overseas for the Paralympic Games.
“I always explain to him: ‘You can do anything that everyone can do, just differently,” she encourages.
Tabone recently submitted a request to the City of Bradford West Gwillimbury to have a proclamation drafted to officially recognize October 25 as National Dwarfism Day. She says people are encouraged to wear the color green on this day.
She hopes to educate more members of the community about dwarfism and how it affects those living with the disease.
“There will always be people taking pictures and making fun of or making jokes, but I remind Christian that it could happen if you are 6ft 9in – it’s unfortunate, but this is the world we live in. “, she laments.
Christian has an MRI scheduled for December involving his spine. But Tabone is confident in Christian’s ability to bounce back and says he can’t wait to try curling this year.
“He’s just an ordinary 10-year-old,” she says. “He plays his video games with his friends and they scold him like any other child.”
To learn more about dwarfism, visit the website. For parents of children with dwarfism, visit: https://dwarfathletics.ca/
“Throughout history, dwarfism has been viewed as a form of fun for people. For parents of new babies with dwarfism, it will be fine… they will be fine and YOU will be fine! It takes time but everything will be fine, ”says Tabone.
Leave a Reply