My daughter Elena was diagnosed with Juvenile Arthritis at age 2. Arthritis? That was an elderly person’s disease, I thought. I had no idea the depth of the disease or what would lie ahead for us.

First, she started with redness and swelling in her knees. I took her into the doctor and they brushed it off as growing pains. After another couple weeks her symptoms got worse. She started vocalizing all her pain. Then one day she woke up and was not able to walk at all. I carried her around everywhere the way I carried her baby sister. I took her back into the doctor and luckily there was a pediatrician on duty and she recognized the symptoms. They told me to head straight to the pediatric ward at the hospital.

We got to the hospital and the pediatrician diagnosed her with Psoriatic Juvenile Arthritis. We still had to confirm with x-rays and bloodwork, but she was positive that’s what was the cause. A million questions were going through my mind. There was talk of drugs that I could not even pronounce. Everything seemed to be blurry to me. I didn’t understand why or how. She was a perfectly healthy child 2 months before.

I also had a nine month old baby girl and due to the stress of this I lost my milk and wasn’t able to feed her anymore. I would lie awake at night wondering if my little girl would end up in a wheelchair. She was put on some very strong steroids temporarily and within a week was walking again. We were so happy. However, that was just a short-term fix and we knew we would have to begin her on a path of stronger, more long-term drugs to keep her walking. The fear of Uveitis starting, which is inflammation behind the eye muscles that can lead to blindness? Well that was a completely added stress and it still worries me every day.

Like anyone, I feared what Methotrexate and Naproxen could do to my little girl long term. I didn’t want to make the wrong choice, but I had to. I spoke with numerous specialists and sought out the opinion of Children’s Hospital. We decided it was the best route to go with her.

It worked. Our little girl is virtually symptom free. No one who doesn’t know she has a Rheumatic Disease would know it by looking at her. She runs, plays and is doing just fine now. We only hope that she’s symptom free for the next year and can discuss the possibility of remission and removing her step by step off the drugs. She’s had some flare ups which have set us back though.

I still don’t sleep well though. A mother’s worry can take over your whole life. It affects me every day. Knowing this disease is in her. Having to by my own hand inject her with medicine. Having to sit there while she’s poked at for her routine bloodwork. Most of our lives revolve around this now – in and out of the lab, doctor’s office, hospital visits and eye specialists. Unless you go through this and live this life no one can truly understand your pain.

I’ve had to become a nurse overnight. Learning about these drugs, how to give needles, how to cope. It has been a very rough couple of years for us so far. On top of that, there’s so many
comments and criticisms from people. Not just people, friends. Insinuating that I should go the “natural route.” What does that even mean? Do you honestly think I would choose this for my
child if it wasn’t absolutely the best choice for her? There’s lots of hurt and anger which I am trying to learn to deal with as time goes on. It’s just hard plain and simple.

I can only hope my words can touch and help someone else going through this same thing right now. Know that you are not alone and there are others that feel your pain. Stay strong and try to
not let this disease run your life. Let your kid just simply be a kid. There will be many ups and downs in their life to have to endure. This is just the beginning, but you will get through it!

Erika lives in West Kelowna, BC and is a stay at home mom to two little girls. Erika and her family anticipate being greatly impacted by the recent loss of a pediatric rheumatology specialist at the Penticton Arthritis Centre where Elena gets treatment. Through sharing her story, Erika hopes that it will help other parents know they’re not alone in this difficult journey.

Read more stories like Erika and Elena’s and share your own at cassieandfriends.ca/our-stories!