June 4, 2010
By Cathy Pelletier, Chronicle Staff Writer
In many ways, Emily Croxon is a normal nine-year-old girl. She loves arts and crafts and adores her three cats, two dogs, pig, and bird.
And although she's afflicted with Systemic Juvenile Rheumatoid Arthritis, a condition which causes debilitating pain and swelling from medication, Emily faces her illness with a smile.
"We've been fighting it since age three," explains Sheri, her mom. "It flares up in different joints all the time."
Sometimes she can't move her arms or legs, or even stand. Whenever Emily takes steroids to control the pain, her body swells, causing people to stare and laugh at her.
But instead of becoming bitter, she bears it all with a smile, and a plan.
To raise awareness and research money to combat the disease that causes such pain — both physically and emotionally — Emily plans to sell her colourful homemade bracelets at Central Park during the Mudcat Festival.
"The reason she started making bracelets is because so many people stare at her and make fun of her," says Sheri. "She wants to make people aware of what she has and why she's different. A year ago, she was almost off her steroids and went down to normal size, but when she's on Prednisone, she swells up."
Emily's currently on a trial basis for Kineret, which is not classified as a steroid, and the side effects aren't as severe. The drug has been approved in the U.S., but has yet to gain government approval in Canada. There's a constant concern that the drugs will damage her liver and kidneys, as well as slow down her growth.
"The doctors and the team at McMaster are following her closely," says Sheri.
"Now she gets a needle every day in her arm. I feel like I don't have a right to complain when I have a pain," she adds. "When Emily's pain flares up, she can't even sleep and then we're at McMaster."
In addition to undergoing blood-work every six weeks and trying various drugs, there's also a danger that they'll compromise her immune system, says Sheri.
"If she gets sick, chances are she's in the hospital, so we have constant worry about colds and things that will harm her. We're in the hospital at least twice a year. Last time she was in for a month and when she was diagnosed at age three, she was in for two months. She went through things I couldn't imagine going through and still having a smile on her face. Her teacher, Miss Phillips, says 'To know her is to love her.'"
At Grandview School, Emily's two best friends — Ethan and Jessica — are compassionate and understanding toward their friend's plight. The school hosted an arthritis awareness day to help staff and students understand and support the determined Grade 4 student.
Her budding bracelet business has been called Emm's Circles of Strength, a name suggested by her friend.
Last weekend, a group of family and friends joined forces in a bracelet blitz bee, helping add to Emily's vast collection of bead and hemp designs.
"Because she's so sore, she wasn't mobile for a while," says her mom, "so she's become very crafty, and is very happy doing arts and crafts. She came up with this idea and it's making the best of a bad situation."
Emily will appear with her Emm's Circles of Strength bracelets in a booth at Community Lane during the Mudcat Festival weekend. All the money she raises through her $10 bracelets will go towards finding a cure for Juvenile Rheumatoid Arthritis.