Ambassador Alicia in the Arena

“Don’t stand behind the horse” she said, after I confessed to Alicia that I am a city guy, with no solid understanding of horses. Noting that my goal was to not be stepped on, I had asked her for advice. So I took a giant sidestep to the left.

Meet Alicia Steinkraus, 2017 ambassador for the Walk to Fight Arthritis in Kitchener on June 4. You can support her team here or find out more about The Arthritis Society here.

Hi, I’m Darin White, on assignment for The Arthritis Society. I had a delightful adventure meeting Alicia at the stables west of Kitchener where she rides every Monday.

Alicia lives an active life and to see her tacking up Cash, this beautiful Arabian horse, you would never guess that she is managing her condition of juvenile arthritis with weekly injections of Methotrexate into her joints to relieve pain.

Alicia’s dad Richard and mom Trish came by the stables after work. Together with their son, Matthew, they live just down the road. Trish described their journey in words that, as a parent myself, connected right to my heart:

It was a long journey until Alicia was formally diagnosed with Juvenile Arthritis. She started complaining around the age of 4 that her legs were hurting. I figured it was just “growing pains”. I remember going to Marineland and the whole time she was complaining and kept asking for a stroller. She played tee-ball that year and I noticed her kind of limping around the bases. That is when I looked at my husband and said “something is wrong”. The next day when I was getting her dressed, I noticed her right knee was really swollen and warm. That is when I took her to emergency at the hospital. The doctor rhymed off a really big list of diseases where swollen joints were involved and we were referred to a pediatrician.

It got worse. In the mornings, getting her up and ready for school was a struggle. Her legs would be stiff and sore in the morning until she was up and moving around for a long time. I remember her crying and trying to go up the steps on the school bus and the bus driver looking at me as if to say “What is wrong?”

She started off on Advil, and then she went to Naproxen. Eventually she was referred to Sick Kids Hospital in Toronto where her rheumatologist did injections in her knees, and ankles and she had to be bedridden for two to three days after. Trying to make a kid sit still for two to three days was extremely difficult. I used to buy a whole bunch of crafts and rent a lot of movies for her. She was then put on Methotrexate pills which didn’t produce the results that they were hoping for. It wasn’t until she was around 6 ½ when she was put on Methotrexate injections that she finally got relief and was able to function like an average child. She is very active and was in gymnastics for quite a few years. Two years ago, she was asked to join the Senior Petite Elite group to prepare her to go competitive (she was at the gym 8 hours a week). Her gymnastics career ended when she broke her arm two years ago. Now she competes in horseback riding shows. She also joins the cross country running team every year and she usually qualifies to go to finals for track and field running events.

Trish continued:

For me, the diagnosis was difficult. It meant a lifetime of doctor’s appointments and she may not live a “normal” life. It meant she had a disability. As a parent, all we want is our kids to be healthy. For my husband, it was relief in some way. After looking at the list of illnesses that involve swollen joints, arthritis was manageable. It could have been so much worse. Alicia was too young when she was diagnosed to really understand. But her reaction today is that she has a disability and it limits how much she can do and how many things she can do but she is thankful because it could have been worse. Since the Methotrexate is working so well for her, she looks at herself as a normal person and believes that this diagnosis makes her a stronger person than she already is.

Currently she gets an injection once a week, she takes eye drops once a day (she also gets inflammation in her eyes), and takes folic acid daily. She goes to see her rheumatologist every 6 months (when things are good) and she sees an ophthalmologist every 4 months (when things are good). She also has to go for blood work every 3 months to make sure the medication isn’t affecting her organs. Other than the inconvenience of all these appointments, her life is quite normal. When she does have a flare up, these appointments increase and our stress level is affected until she is back to normal. About three years ago, her rheumatologist tried weaning her off her drugs to see what happened. It was going so good and then she had a flare up and it felt like we were back to square one.

When we talk to our family and friends about her arthritis, people are surprised she has it at her age. They figure that arthritis affects elderly people. The next thing they ask is “will she grow out of it?” We are hoping with all the research that hopefully there will be a cure one day.

At the stables, it was immediately apparent that riding horses necessitates a good deal of maintaining horses. Alicia and the other riders, obviously very practised at this, were a flurry of activity as soon as they were dropped off by one of the dads.

I’m told that horses, like people I suppose, are more cooperative when fed.

It was at this point, when Alicia just picked up Cash’s hoof for cleaning, that I started thinking of her as “Horse Boss”.

This is tack for English riding, versus Western style. Everything from the saddle to the horse’s gait is different.

“Is this a halter?” I asked hopefully. “Bridle. The blue one is the halter” Alicia explained.

Then into the riding arena…

And up into the saddle for warm-up. I asked where I should stand and everyone said “Just stay in the middle.”

Jenn, the trainer, patiently answered all my questions about kinds of horses…

And gaits.

Richard, Alicia’s dad, arrived and we chatted about an upcoming riding competition in Clinton.

What struck me about Alicia as we watched her ride, coaxing Cash into various steps and directions, was just how confident and capable a rider she is. I’m sure that confidence will serve her well in the future.

I got thinking more about what Trish had written:

We found out about the Arthritis Society through Sick Kids Hospital. Alicia’s rheumatologist told us about the opportunity to attend Camp Cambria. That is where we finally found the support we needed. We attended a session before going to camp and we were able to talk to other parents and their children with arthritis. It was comforting to listen to their experiences and learn about other medications that are available. We met a few kids that have been in remission which gives us continued hope she may grow out of it. Alicia met quite a few friends at Camp Cambria last year and continues to stay in contact with them through Snapchat and Instagram. She is excited to go again this year. Without the Arthritis Society, I might not have met another child/parent going through the same experiences. There is always comfort in numbers.

We decided to participate in The Walk to Fight Arthritis this year as a way of saying thank you for all the support and for all the great things The Arthritis Society has given to our family. We thought it would be a great way to raise money and “give back.” We are truly honoured that Alicia has been asked to be ambassador this year. Thank you!

After riding a while on Cash…

Alicia switched over to Willow.

Jenn suggested a ride outside for photos.

And down the lane they went.

A perfect day for a ride.

Back inside, it was time for a quick portrait…

Of two old friends. Then it was back into the arena to continue practising for the competition.

Trish, channeled Alicia’s thoughts as only a mom can:

Alicia is participating in this walk because she wants to help raise awareness for all the other kids out there and families that might be going through the same thing. She feels so honoured to have been offered to be the ambassador this year and doesn’t know how to describe how blessed and happy she is.

We are very hopeful that with the Arthritis Society’s research and dedication, there will be a cure in the future for arthritis and other autoimmune disorders.

Thanks to Alicia and her family for letting me come into their world for a few hours. All the best in the upcoming Walk to Fight Arthritis. And in the future.

DW