Written by Caroline and Tony Cox, mum and dad of Vicky Cox. Caroline was one of the original founders of CCAA, and is now a Patron for the charity.
“When our daughter was finally diagnosed as having JIA we were initially relieved as many months had been spent visiting doctors, consultants and hospitals. Soon our feelings changed when we realised that this disease was not something that could simply be treated and cured. ‘Why did it happen to her and not to our other children? I wondered if I could have done anything to prevent her from developing it. Should I have done anything different when she was a baby? All sorts of feelings of guilt and disbelief went through my mind.
“You ask yourself what does all this mean?, what does the future hold?, how will this affect the family?, what changes need to be made?, how can we find out more information about this dreadful disease?, what do we need to be aware of?, Is there a cure?, what are the limits of medication?, can we stop the pain?, can we limit the damage? and so it goes on. There are so many questions that spring to mind. Initially you are not sure which way to turn. You are desperate for help and support.
“Time passes on and you start to get a real understanding of how devastating this disease can be, not only for the child, but for the parents. In the main, the day-to-day management of the child falls on the mother, but the effects on the father are sadly unappreciated, particularly if they are reluctant to show their emotions. Trying to juggle the day-to-day running of a home with fitting in the programme of exercises, trips to doctors, hospitals and hydrotherapy sessions is far from easy. I can remember initially thinking, ‘how on earth will I fit everything in?’, but the realisation that our daughter had to come through all this spurred me on. I felt that I was doing something positive to help her. I know that many times we both felt frustrated and very isolated. There is no doubt that the whole family is affected in some way, from the brothers and sisters to the mother and father, from the grandparents to the aunts and uncles. We also found that some friends no longer included us. I am sure it was because they did not know how to cope with our daughter’s illness, and felt guilty.
“The added pressure on the family can be quite disruptive, and can have many effects on the day-to-day running of the family unit. Even a simple day out needs to be planned and may even have to be cancelled at the last minute because your child is unwell. The unpredictable nature of the disease is very difficult at times and causes a lot of problems. It can bring families closer together, but also can unfortunately have the opposite effect, where the pressures and responsibilities become too much.”
“What are the good things that can come out of it ?
“A real appreciation of how fortunate we are to be in good health. An understanding of the problems that children experience with this illness. Knowing how we can help them through the bad days and enjoy the good days — and there are some. Our other children have a greater appreciation and understanding of children who are less fortunate than they are. The great character that comes through each child that suffers from JIA. The courage and commitment that they show.
“Many children with JIA ask the question ‘Why me?’ This is a very hard one to answer.
“No matter what happens you cannot bury your head in the sand, it is not going to go away. Make the best of the good times.”