March is Childhood Arthritis Awareness Month in Canada, a month that has great significance for my family and I as my youngest daughter, Catherine, was diagnosed with juvenile idiopathic arthritis (JIA) a little over 3 years ago, just 10 days before her 8th birthday. Despite this, she has shown incredible determination and perseverance and has remained physically active, excelling in many sports. She is a member of her school’s cross-country running team, their basketball team, and is a member of a local competitive badminton team. Her incredible success this year on the badminton court (she’s currently undefeated in our province this year in U12 events and won 2 gold and a silver medal at her first national-calibre tournament in December) has landed her a fair bit of media attention and in February she was honoured by the Arthritis Society of NS as this year’s Arthritis Hero at their Annual Celebrity Roast. At the Roast, both she and I spoke in front of about 500 people to share a part of our family’s journey in living with this disease.
I thought today, on this windy post-blizzard Nova Scotia storm day, I would post our speeches.
Most people don’t associate the word arthritis with children, but my daughter, Catherine, is just one of thousands of children in this country who are living with juvenile arthritis.
Our family has been impacted by the disease for over 6 years. At first, it didn’t have a name. It was the terrifying mystery that caused our youngest daughter to wake up screaming and writhing in pain for hours in the middle of the night, to have low grade fevers that made no sense, and made her skin so hot that I remain convinced that I could have fried an egg on her back had I tried. And while I was consistently told it was just “growing pains” there was never, for even a moment, any doubt in my mind that it was something much more serious so, as a parent, I persisted.
It took about three years worth of testing to finally get a diagnosis. I couldn’t begin to count how many blood tests and x-rays she endured or how many trips to the ER it took before she was finally given a referral to the IWK.
She received her diagnosis 10 days before her 8th birthday. Our appointment that first day lasted almost 9 hours as we met with the pediatric rheumatologist, medical residents, nurses, the physiotherapist, and the research coordinator.
Little things that had baffled us suddenly made sense – like her inability to ride a bike because she didn’t have the range of motion to pedal and her insistence that skating hurt because the disease had caused one leg to grow longer than the other.
With a diagnosis came some relief that we finally knew what was going on with our daughter. That relief turned back to fear when we learned her sub-type of juvenile idiopathic arthritis put her at risk of developing a serious eye disease that could cause permanent vision loss, so not only would she need to be followed by the rheumatology team at the IWK, but she would also need to be followed very closely by an ophthalmologist for the next several years.
That day of diagnosis we also learned how much damage the disease had done to her little body and what the long journey to get her well again would look like. She would require daily medication and extensive physiotherapy and, just 5 days after diagnosis, she had her first day surgery to drain fluid and inject her knee.
When you have a child diagnosed with juvenile arthritis there are things you expect they will miss out on. Experiencing the joy of summer camp was one of those things. Sending her to a regular camp wasn’t even plausible given the medication she is on, the healthy diet she requires, and the daily physiotherapy exercises she needed to do. So when I went to the mailbox two years ago and found a letter inviting her to attend the Arthritis Society’s very first camp for kids in the Maritimes living with juvenile arthritis, I was completely overwhelmed with emotion. I remember very clearly the tears rolling down my face as I learned Camp JoinTogether would have a doctor and nurses on site throughout the camp to take care of her – people who understood her disease and I could trust with her medication and, more importantly, she would FINALLY meet another child living with the same disease.
I’m going to hand it over to Catherine now to tell you all about it…
Catherine’s Speech (written entirely on her own):
Good evening everyone.
My name is Catherine Talbot and I’m going to tell you how Camp JoinTogether helped me be who I am today.
Being at a camp is what most people say is just about making new friends and having fun, but at this camp it’s more than just that. For most of us, it’s our only time to be with other kids also living with juvenile arthritis.
In the summer I was there for a week exploring camp. There were games that we played like Capture the Flag (but with teddy bears), collecting items while blindfolded, playing all kinds of games in the water, and best of all – taking a dip in the lake after an energetic day.
At camp, the counsellors take care of you while you’re there and still remember you after camp. My counsellor last year was a girl named Emily. She even sent me a birthday card this year.
To me, camp means being with other kids who have arthritis too. I get to be myself and nobody will judge me. Even though we have a disease, it doesn’t stop us from going out and exploring the adventures of life and doing what we love to do.
Some people have arthritis worse than others, some are about the same, but there are kids who have very bad arthritis. The good thing about Camp JoinTogether is no matter if you have a wheelchair, crutches, or a sore leg, you’re still able to participate in every activity and have fun doing them.
All of us kids should be able to go to camp, have a good time, and make lots of new friends.
It’s kind of neat when you walk into the IWK and see someone in the waiting room that you recognize.
I can’t wait to go back to Camp JoinTogether next year because you play a lot of games, you get to eat cotton candy sometimes, you can even dance on the stage, have a campfire, and you are accepted for being who you are.
My name is Catherine Talbot and I thank you all for listening.
Following Catherine’s speech, attendees of the Celebrity Roast were told that the cost to send a kid to camp for a week is $1000 and donations would be greatly welcome. This year’s goal is to send at least 70 kids to camp. A huge thank you to all who donated that evening and raised over $26,000 to help send kids living with arthritis to camp. You rock!!!
If you would like to help send a child with juvenile arthritis to Camp JoinTogether please contact Jone Mitchell of the Arthritis Society of N.S. (902) 429-7025 x 232. Tell her Catherine sent you!