Growing up in Goderich Ontario, Veronica enjoyed activities like swimming, reading and riding her bike. But in the summer of 2011, at only four years old, everything changed. That is when she began to struggle getting herself dressed. Thinking it was natural child behaviour, her parents and teachers thought nothing of it and assumed she was simply being lazy in wanting other people to dress her.
Over time, Veronica also began to develop a strange facial rash and what looked to be an infection around her fingernail beds. Her family then knew something was wrong and immediately took her to their family doctor. She received topical creams at the initial appointment and her parents were told to come back in six weeks if the symptoms persisted. Weeks passed and Veronica’s symptoms were still present and she had also developed muscle weakness. Upon her second visit to the doctor, Veronica was referred to a paediatrician and subsequently a paediatric rheumatologist – Dr. Brian Feldman and his team at SickKids Hospital in Toronto. Finally, after many tests, Veronica was diagnosed with JDM - Juvenile Dermatomyositis, an autoimmune disorder that causes inflammation of skin and muscles. Veronica was no longer able to do things that many children take for granted – getting out of bed, getting dressed, walking to school and of course, enjoying the activities she previously loved. She was confused, sad and in extreme pain as the rash spread from her face to her hands and elbows.
Now 10 years old, Veronica is still receiving treatment for JDM, including a variety of medications with adverse side effects and monthly infusions leaving her tired and weak. Travelling long distances for each appointment takes a toll on the family but what’s more challenging for Veronica’s mother, Shannon, is the inability to answer her child when asked “When will I get better?”
Though gruelling, the treatments greatly help Veronica’s quality of life. She still enjoys reading and swimming and has even joined a local track team. Veronica has big dreams for her future -will she be a lawyer? A baker? A teacher? She desperately wishes her JDM would go into remission but if it doesn't, she knows it won't hold her back from reaching her dreams. She is now taking part in a seven month clinical trial with hopes that the results will not only help her – but also other children. In the meantime, she has created a blog writing about her experiences as a way to express her feelings about what's happening but also letting other kids know that they are not alone. Dr. Feldman and his team are patient in answering her questions, although so far no one can answer the biggest one - "When will they find a cure?"
Shannon says the staff at The Arthritis Society have been very supportive. JDM is rare, affecting 3 in 1 million children, but through special events like the Jingle Bell Walk and Run for Arthritis, The Society has helped their family connect with another family who are also struggling with this disease. For more information about Childhood Arthritis and the services offered by The Arthritis Society, please go to: www.arthritis.ca/childhood. To follow along with Veronica’s story, read more about her journey on her blog, Dermatomyositis For A Kid.