Tanna isn’t asking for much — she just wants her childhood back.
At an age when her life should be brimming with activity, the 10-year-old Peterborough girl is a spectator; watching from the sidelines as she battles a form of arthritis that rarely afflicts children. Tanna wants to do the things kids do — the simple act of writing is painful — but she can’t without severe pain and very often the bleak prospect of days of recovery.
“She’s not living life like a 10 year old,” says her mom Shari. “It’s winter and she can’t go tobogganing. Her body is at war with itself.”
It wasn’t always this way. In fact, up until January 2015, Tanna was just another happy and active kid.
That all changed for the Keith Wightman Public School student with a diagnosis of Raynaud’s syndrome, which painfully manifests itself in the form of excessively reduced blood flow in response to cold or emotional stress. The result is a discolouration of affected extremities and the sensations of cold and/or numbness.
But Raynaud’s wasn’t the only demon to invade Tanna’s body. Subsequently, it was determined the root of her health troubles was Mixed Connective Tissue Disease (MCTD), an autoimmune disease that, in the simplest terms, sees one’s body attack itself. Termed an overlap disease, MCTD typically causes joint pain and swelling, malaise, muscle inflammation and Raynaud’s.
Another byproduct is inflammatory arthritis.
It’s with Tanna’s struggle well in mind, and that of many other children with arthritis, that The Arthritis Society, Peterborough Region (Cherney Building, 159 King St., Suite 203B, 705-742-7191) presents Taste!, a March 5 fundraiser in support of childhood arthritis programs and initiatives.
At this gala event, held at the Canadian Canoe Museum on Monaghan Road, guests will sample gourmet appetizers, entrees and desserts along with a selection of craft beers, liquor and non-alcoholic drinks. There will also be a silent and a live auction, the latter overseen by Keith Monk.
Tickets for the 6:30 p.m. event are $50, $75 (which includes a $25 tax receipt), or $100 (which includes a $50 tax receipt).
To purchase tickets, which are only available until February 29th, visit www.arthritis.ca/ptbotaste or contact Karen Thomson, Community Development Manager at the Arthritis Society, at kthomson@arthritis.ca or 705-742-7191.
“This is the first time we’ve held a fundraiser of this kind locally,” explains Karen, noting the local agency’s third annual Walk To Fight Arthritis event will be held June 5 in Jackson Park. Details and registration for that event can be found at www.walktofightarthritis.ca.
“We want people to understand that kids get arthritis,” Karen says. “It doesn’t just affect older adults.”
Life for children with arthritis
March is Childhood Arthritis Month, so the timing of Taste! is clearly by design — serving as much as an awareness heightener as a fundraiser.
Hanging on a wall in Karen’s office is a chart that details the prevalence of chronic conditions in Canadians aged 15 and older. Arthritis is number one amongst women; in men, it is ranked number three.
In terms of childhood arthritis, the numbers are equally sobering. Some 24,000 Canadian youths aged 18 and under live with a form of arthritis, which is particularly harmful to still-developing bodies. The good news, according to Karen, is research advances are continually being made. But research requires serious money. Events like Taste! and Walk To Fight Arthritis are key to that effort.
“I’m very excited, I love doing these types of things,” enthuses Karen, referring to Taste! and pointing to the long list of vendors committed to the event. That list features Black Honey, Lantern Restaurant and Grill, Chef Brian Henry, SKH Events and Catering Co., Persian Empire, The Pizza Factory, Doo Doo’s Bakery and Grill, The Spice Co., The Publican House Brewery, and Steam Whistle.
Among those Karen is hopeful will be on hand is Tanna and her mom Shari. The reality is it will depend on how Tanna is feeling that day.
“I’m sad … sometimes I’m mad; I don’t have a lot of patience,” says Tanna of her emotions surrounding her condition, which sees her receive a weekly chemotherapy injection as well as taking prednisone, a corticosteroid drug that’s particularly effective as an immunosuppressant.
One very bright light for mother and daughter has been the involvement of The Arthritis Society’s occupational therapist Osk Jenkins. She helps Tanna self-manage her condition — the goal of any treatment in the absence of a cure — bringing relief and, perhaps, remission on some level.
“We don’t see as many kids as we’d like to and that’s frustrating,” notes Osk, who brings 30 years of experience in her field to the benefit of Tanna and others. “Getting referrals is still an issue because we know there are other children who could benefit.”
“My goal is to see us all connect better so others who need treatment are seen and can be helped like Tanna.”
Also helping Tanna cope is the Five Counties Children’s Centre, where she is able to partake weekly in yoga and is learning keyboarding, which is less impactful and thus less painful than writing.
A single mom with another daughter (six-year-old Riley), Shari’s journey over the last year has been a tough road to travel. That journey started with her suspecting Tanna had a serious health issue and then her self-diagnosing Raynaud’s.
“Trust your gut,” she advises other parents. “Tanna’s first two blood tests came back normal but I knew something was wrong, so I persisted. Even now I do a lot of research. Sometimes I feel pretty helpless. Frustrated too. But she’s strong. She’s going to get through this.”
Wanting to one day be a teacher — she lists reading and English as her two strong subjects — Tanna has been in school just eight days since the beginning of the year. She has fallen behind in her education as a result — another concern for mom.
“The school has been great for the most part,” says Shari. An exception, she notes, has been the school’s insistence Tanna attend gym class when she is in school — where her daughter can only watch as her classmates do the activities she once did with pain-free ease.
From all outward appearances, Tanna is a typical 10 year old. A big smile and a gift of gab are cornerstones of who she is. But that exterior presence is deceiving and is tied to one of her biggest frustrations.
“Just because you can’t see something wrong, you should believe people when they tell you there is something wrong,” says Tanna, noting she often hears doubting words from her peers.
“You’re going to have good days and bad days,” adds her mom. “Today is a good day. Tomorrow … we’ll see.”
You can help the Arthritis Society support children like Tanna to live with their arthritis — and hopefully one day find a cure — by purchasing tickets for Taste!.
