Living with arthritis- Millie's Story

Millie’s journey started in October 2015 when she was only 17 months old. One day I noticed she was limping.  Both myself and my mum thought that she may have twisted her ankle. As the days went by, the swelling wasn’t going down and it was taking her up to an hour in the mornings to start walking. She didn’t want to put pressure on her feet as she was in so much pain.

I took Millie to our GP and was referred to see a paediatrician. After blood tests and scans were completed, Millie was referred to Dr Adib in Brisbane (Paediatric Rheumatologist) who gave us the bad news that Millie had Juvenile Idiopathic Arthritis (JIA). (Oligo arthritis). Millie underwent her first procedure when she was 18 months old.  Corticosteroids were injected directly into both her knees and ankle joints to reduce inflammation. As a young mum, you don’t expect to see your child in any pain especially at such a young age. I keep thinking and asking, ‘Why Millie? What did my husband and I do to cause this?’ Friday the 13th of November 2015 made me a stronger mum and woman. I had to know what was happening.  I started my research and I now continuously explore information about JIA to ensure we are making the best decisions for Millie.

The day after the procedure was like instant relief for her. Trying to keep an 18 month old rested for 2 days was near impossible. She could now move without pain and had movement in which she didn’t have recently.

As months went on, Millie started Methotrexate. We had to learn what her emotions were and how she was feeling as she wouldn’t express when she was in pain or feeling sick. Some days Millie would just lie and watch TV or her appetite was affected – then you knew she wasn’t feeling well.

As Millie has learnt from her JIA, she continues her journey with this disease and adapts to it. She has monthly blood tests and that is stressful enough for all concerned. She climbs, walks, runs (fast walk) and plays with other kids and tries what they are all doing. Nothing stops her.

Late February 2016, I noticed that Millie was walking strangely again. We are now monitoring her toes as they are showing inflammation. As I watch Millie on a daily basis, especially when she is with other kids, it brings a tear to my eye and breaks my heart that her run is really a fast walk. Her hips are swinging and her arms are going as fast as they can. I hope and pray that one day she will be in remission and that she can be a normal little girl. I still to this day, 6 months later, ask ‘Why, Why Millie?’ I cry frequently. The pressure as a mum to help her through the days is hard as she wants to be picked up, carried, cuddled and massaged.

As a community we all have someone close to us with Juvenile Arthritis, I strongly believe that we need to spread the word about JIA and how common it is. The doctors warn you about Downs Syndrome, Diabetes, Autism and so on, but never once mention that Arthritis is so common in children.

Please share my daughter Millie’s story to help bring awareness of JIA and I ask that people will donate to the ‘Time to Move’ 10000 steps per day challenge. Any donation over $2 is a tax deduction.

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