Bonnie doesn't let JIA stop her!
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Bonnie doesn't let JIA stop her!
Bonnie was just over one year old when she was first diagnosed with Juvenile Idiopathic Arthritis (JIA). Her symptoms first started the month before her first birthday.
Bonnie’s journey began while we were at home playing. I noticed one of her ankles looked very swollen and very red. She also wouldn’t bear weight on it. I called the GP and they saw her, however, to start with they thought it was an insect bite. We were sent to A&E to be checked over but then sent home and told to come back later in the week if the swelling hadn’t gone down. Over the course of the next few days the swelling went down and Bonnie seemed to be back to her normal self, cruising around furniture and being happy.
However, while at nursery a week later, her ankle had doubled in size and she was very irritable. I called the GP and they advised going straight to A&E. This is where we were admitted to hospital.
To start with they took blood tests to see how her infection markers were sitting, but they all came back clear. When the doctors came around, they thought it could possibly be a tumour sitting behind her ankle joint.
She was booked in for an MRI scan to see what they could find. Luckily there was no tumour, however everyone was still very unsure what it was, as she was so young. We ended up spending around five days in hospital having MRI scans, blood tests and antibiotics. We left the hospital with no answers.
After that, we became regulars at the hospital, with numerous MRI scans, all of which Bonnie had to have under general anaesthetic. The process was heartbreaking. Seeing your child distressed at having to have general anaesthetic, and then waking up sad and emotional, was incredibly difficult. It was the toughest time of our lives.
We had more blood tests and more doctor appointments and, five months later, she was finally diagnosed with JIA.
It took around five months in total to get a diagnosis. This may not seem like a long time, however for us it felt like an eternity. When we got the diagnosis there was almost a small weight lifted off our shoulders, knowing that with the help of medication Bonnie could still have a happy, healthy life.
I found this part the hardest. I couldn’t take anything away from her, and believe me, if I could I absolutely would have.
We started treatment right away. I was trained on giving her Methotrexate injections.
Seeing your child at such a young age, crying and so unsure of what was going on, and then her source of comfort, her mum, needing to give the injection, absolutely broke me. I knew the medicine was helping Bonnie and that she needed it, but it was just so hard to see her get so upset.
After several months on Methotrexate and steroids, the swelling in her ankle was still there. This meant Bonnie needed to be put on more medication - Adalimumab. Through all of this, Bonnie was a little trooper. She was strong, resilient and most importantly the bravest little girl.
We have now been on medication to help manage her arthritis for nearly two years. So far, the combination of medications has really helped Bonnie to live a very active life.
Bonnie has bad days and good days, but the good days do outweigh the bad. Going into hospital now is a little less stressful. She can still be a little shy, but with some encouragement she is great at letting the doctors look at her and have her eyes tested.
She loves being outdoors and attends an outdoor nursery twice a week. Her arthritis doesn’t stop Bonnie from climbing trees or being involved in any sport or experience. She also loves dancing.
Our lives have adapted to Bonnie’s needs. We go with Bonnie and whatever she needs.
If you would like to share your JIA story, please get in touch.
If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkJIA.org
For support at school, please visit our Parent Zone. Schools and universities can request an information toolkit to support children and young people with JIA in their setting at www.jarproject.org/schools
Many of the resources we have developed can support children and young people at school and with explaining their condition to others such as our "I have JIA" cards. You can access these here.
For support with Mental health, please see our Mental health and wellbeing page here.
You can also help us be there to make life better for children and families affected by JIA by supporting our work at www.jarproject.org/fundraising