From the minute she wakes up Trissanna Hunter feels the pain in her joints, the cracks in her bones. If she was older, like her grandmother, she would simply she would accept her condition as signs of old age, but she’s only 12 years old.
Trissanna has a rare connective tissue disorder known as Ehlers-Danlos syndrome (EDS) for which there is no cure.
The Heritage Park Secondary student was diagnosed with EDS three years ago, but Trissana’s mom, Sara suspected something was wrong when Trissanna was just two.
She often wanted to be carried and complained of being tired. There were other things too, like Trissanna being able to pull her eyelids over her glasses, or twist her foot all the way around.
“It doesn’t hurt,” explained Trissanna, who does it just to “gross out people.”
She can bend herself into a pretzel, but will dislocate all her joints in the process.
The young girl looks and acts like a typical teenager but can’t do most things others enjoy, like shopping, hanging out with friends, or joining a sports team. It even hurts to play her favourite Xbox game.
“I can’t play for long because my hands hurt,” Trissanna explained.
Her pain is chronic.
“A five minute walk hurts.”
Trissanna tried gymnastics five years ago and was good at it.
“It was easy for me because I’m so flexible,” she explained. “But some kid kicked be and I cracked my ribs, so I don’t do it any more.”
It took a long time to heal.
Trissanna bruises easily and has panic attacks when there is a crowd. She only goes to school a few hours a day, usually in the afternoons.
“Mornings are hard for me.”
“We’ve had to learn to do things differently. If she gets bumped, something will pop,” said Sara, who gave up a full-time job to look after her daughter.
There are braces and therapies available to help Trissanna manage her elastic skin and the hypermobility in her joints, but all of it is expensive.
The family is grateful for the help they receive from Variety the Children’s Charity of BC for the past three years.
Variety has helped with the costs for hydrotherapy, physiotherapy, leg braces, orthotics, and most recently provided Trissanna with a body brace, which assists with reinforcement and posture.
“Variety has been really, really good to us,” noted Sara. “I couldn’t do it without them, and I still need their help. There are always new things coming up, new therapies to try.”
This year, Trissanna will attend a clinic to help mentally cope with her pain.
She is also excited about the possibility of getting a service dog to let her know when she needs a break, but more importantly, to provide companionship.
Trissanna says she doesn’t have many friends because others don’t understand her condition.
The family is hoping Variety will help pay for the new therapies.
The Variety Club helps more than 1,000 B.C. families every year with special needs. Funds are raised throughout the year, and the biggest push is the Show of Hearts Telethon.
“The telethon is our signature fundraiser,” said Bernice Scholten, Variety’s executive director. “Once a year we ask viewers to invite us into their living rooms to see first-hand the impact their donations make and ask them to support children who have special needs.”
Variety’s 48th annual telethon will be aired on Global BC from 7 p.m. on Jan. 25 to 5:30 p.m. on Jan. 26. This year’s programming lineup includes performances from Bruce Springsteen, Barbara Streisand, and Elton John.
To make a pledge, call 604-310-KIDS or visit variety.bc.ca for more information.
