The Williams Family
We are the Williams Family, mum Tamsin, dad John, James (9), Charlotte (6). Onset of JIA for Charlotte began one morning in 2013 when she woke up complaining that her knee was hurting. I didn’t imagine anything was wrong so told her she would feel better when she got going (how I regret those words now!).
After a little while she sat down on the bed in my bedroom and said “Please mummy take me to the doctor, my knee really hurts.” In a hurry to get ready for work, I had a quick look and to my surprise, her knee was very swollen. Off we went to the GP, who suggested three days rest, ibuprofen and to come back if it hadn’t resolved. So, three days later we found ourselves back at the GP’s surgery. We were sent straight to hospital with suspected septicaemia! I had no idea what was going on, which was a little scary.
Having ruled out septicaemia, we then had six weeks of appointments with an orthopaedic surgeon. With each visit Charlotte was slightly worse, another joint affected, more pain, less movement. She had x-rays, MRI scans, blood tests, but nothing revealed itself. It was very frightening to see our child slowly lose the ability to walk and be utterly powerless to help her. She wasn’t even given anything other than paracetamol and ibuprofen which did nothing to ease the pain. Finally in week 7 we were referred to a Paediatric Rheumatologist, who was able to give us a very quick diagnosis. We greeted the diagnosis with relief initially, but then the reality started to dawn on us: that our beautiful, funny, clever, sporty daughter had an incurable, life limiting, chronic condition.
All this time we were coping with Charlotte’s illness and diagnosis, we also had our son James to consider. He’s a quiet little boy and not much of a talker. We had to spend time talking to him about what was going on, explaining after each hospital visit what was up with his sister and what we were going to do to help Charlotte. He seemed to take it well with few questions and not much upset, but we felt a lot of guilt about farming him out to friends or Granny and not being there for him as much as we could have been.
Looking back on the last fifteen months, we have had a real roller coaster. After diagnosis, Charlotte had three joint injections under general anaesthetic. The results were miraculous, she was up and about the very next day and she was utterly delighted! We were all overjoyed. Then came the shock of another flare up two months later and more joint injections. A week on a farm in Devon with Charlotte’s arthritis flaring wasn’t the best holiday ever. After that we went onto Methotrexate. That did not go well for us and injection night became more and more difficult. Poor James would sit quietly in the sitting room watching telly while we rounded up a scared 5 year old, held her down and injected her. That was a real low for us as a family. We took each day as it came and braced ourselves for Friday night. We tried a lot of tactics each week Charlotte just got worse and worse, vomiting, crying, shouting, running away and hiding from us and vomiting again after the injection. Eventually we went back to our consultant and at that appointment we were told that the methotrexate hadn’t been working anyway, she was having a massive flare (ankles, knees, hips, elbows, wrists and fingers) and severe uveitis into the bargain. This was 29th November 2013. Charlotte was booked in for yet more joint injections under general anaesthetic and a steroid injection in her eye. I shed a lot of tears in private at that time. With hindsight we were lucky to have Christmas to plan for and look forward to. It gave us all something to focus on and a reason to be happy and spend time together as a family with very little time to dwell on what lay ahead. After the third lot of joint injections in February 2014, Charlotte was put on Humira. It has been a miracle drug for her: at her school sports day in 2013 Charlotte had to be carried into school and she sat on the side lines to watch her friends competing. At sports day 2014 Charlotte came 3rd in the 50m final! We were quite literally the proudest parents that day.
What does it mean for us as a family to have a child with JIA? It means that we spend a lot of time in hospitals and travelling to hospital appointments, which means for James that he gets to spend time at friends’ houses on play dates, or at Granny’s house for tea. For my husband and me it means we have to be meticulously well organised, negotiating time off from work, rearranging diaries to fit in with Charlotte’s appointments, (our diaries are full of hospital appointments, blood tests, Humira delivery dates, Humira injection days, prescription renewals). Our days are filled with making sure Charlotte has her eye drops (6x a day) and her tablets and ibuprofen (4 x a day) and also coping with the additional financial burden of all those extra miles in the car or train to hospital.
We have at times struggled emotionally, physically and financially. James has also struggled to cope with it, but his school have been a fantastic support and he has access to the school counsellor whenever he wants a chat – he tells me that this has been a real help for him!
Disappointingly, we have lost some friends along the way – some friends just distanced themselves and seemed to fade away, but others are always there with offers of help, babysitting, play dates for James, a shoulder to cry on, a night out. For Charlotte, the most important thing for her is to know that whatever life throws at her, she has her family to support her, to encourage her to succeed, to pick her up when arthritis knocks her down, to carry her when arthritis stops her walking, and cheer for her when she overcomes the pain and adversity this disease throws at her. For John and me it means accepting that we have a child who has arthritis and that life is not going to be what we expected. For us as a family, it means our normal is slightly different to other people’s normal and sometimes it is more of a struggle, but we have each other, we can support one another and be strong for each other and we will not let this disease stop us from being a happy, caring family.
By The Williams Family