Caroline Cox from Worcester has, for a number of years, provided a 24/7 telephone support services for families all over the country whose children have developed arthritis.
She has given presentations at international conferences in the presence of eminent medical professionals specialising in the field of Juvenile Idiopathic Arthritis (JIA); helped to run a national charity and supported thousands of families.
There probably isn’t much she hasn’t done in connection with her role as a founder and the general secretary of the Worcester-based CCAA.
But this 70-year-old mother and grandmother is the last one to shout her achievements from the rooftops. She is a model of modesty and calls herself a team player rather than a leader.
Now, after 28 years as the backbone of the organisation she has decided it is time to take more of a back-seat and has retired from the day-to-day activities – though continuing her involvement as a patron.
The decision was met with a flood of personal messages from families on the receiving end of her voluntary work and from medical professionals recognising the impact of her tireless efforts to support, advice and offer practical help to those families affected by JIA.
Caroline was well placed to undertake this task – she knows exactly what it is like for a family to deal with JIA. At the age of about four her youngest daughter Vicky developed a severe form of the condition which had a devastating effect on the entire Cox family.
Caroline, from Battenhall, said in 1985 Vicky experienced a series of unexplained medical conditions – including meningitis.
“It was thought she had TB meningitis. She was in hospitals in Worcester, Birmingham and the East Midlands and she was treated for nine months. When she finished the treatment her health plummeted.
“She was re-admitted to Worcester and the paediatrician had some knowledge of Juvenile Chronic Arthritis as it was called then. Vicky was referred to the national centre at Northwick Park Hospital in London and seen by world authorities on the condition.”
This was the start of a long haul of treatment which saw both Vicky and her mum travelling back and forth to London for months on end – one spell of treatment in London lasted for 17 weeks – while her husband Tony, family members and friends helped to look after their other five children.
“It is an auto-immune disease and the immune system is very compromised. She had to have massive doses of steroids, which affected her growth, three weekly infusions to boost her immune system and other medications like anti-inflammatories.
“We nearly lost her a couple of times. She was very ill on a number of occasions,” said Caroline. “Tony was fantastic and a lot of good neighbours, friends and our parents helped.”
But JIA is very unpredictable, explained Caroline, and Vicky could feel fine in the morning and become really poorly later in the same day. “Trying to make plans for anything was impossible and it was difficult for the other children. You do not know the impact it has on family life until you have experienced it.”
As a result of various trips to hospitals for treatment, Caroline met two other mums whose young daughters were all living with the same condition. They formed a bit of an informal support group and, spurred on by health professionals, they decided to set up the national charity CCAA in Worcester.
“We supported one another and talked about the impact it had on family life. At Northwick Park Hospital, I met other parents who were going through what I was going through.
“It must have got through to some of the professionals at Northwick Park that we were supporting one another. I was invited to talk to some of them from the paediatric rheumatology ward to give a mother’s perspective. I thought it was going to be about 10 people and 50 turned up.”
Caroline added: “The charity just evolved and grew but I felt so passionately about how Vicky’s illness had affected Tony and me and the other children and how much a support group run by parents and professionals was needed.
“I could not help Vicky apart from supporting her. But I could help other parents in the same situation. There was nothing specific for supporting children with JIA and their families at the time.
Article courtesy of Worcester News. Read the article here.