The Butler Families Story
Our son Richard was 9 years old when one night our daughter Natalie called from her bedroom, “mum Richard is crying”. When we went to his room to ask “what was the matter” he pulled down his blankets and to our horror his knee was the size of a softball. He was in so much pain.
It was a trip the Starship Hospital that night, after many excruciating attempts with needles to drain the fluid from his knee that had built up, tests confirmed that he was carrying the genetic gene B27 and was diagnosed with Spondylitis Arthritis.
It spread rapidly through to his fingers and feet. After a few weeks stay in hospital in traction we were sent home with splints and medication to administer every night, medication physio exercises that were painful to do. A hospital schedule of clinic appointments, hydrotherapy, physio would soon become part of our lives for years to come.
My husband David and I sat at home bewildered and felt alone as we told family and friends that our once healthy energetic boy had what everyone thought was an old person’s condition Arthritis. How cruel for someone so young to live with this pain that you could not see, and caused limited movement. Crutches became our new fashion accessory as he could only walk for short distances as the pain would become unbearable.
I had not heard of any other children with this, children and teachers at school did not understand what was wrong because from the outside he looked fine but he could no longer participate in the physical activities, not been able to sit for long periods of time at a desk, countless days off school, he would tire easily and become withdrawn. They did not understand that this was a young person’s battle too. There was no support system for him or our family.
I then contacted the Arthritis Foundation and I was told that they were not equipped for children and needed most of their limited resources for the older people and instead put me onto another parent whose child also had Arthritis and was around the same age. That was Phil Donnelly and Rachel.
I picked up the phone and spoke for a while and we both realised that there was no support or financial assistance available for these children, or their families coping with this like other groups. The stress and strain with, limited resources sparked a need for a support group.
I was sitting waiting for our hydrotherapy session one day when I got chatting with another mother Kristin Kennedy whose daughter that was much younger than Richard was also struggling to cope with Arthritis. We sat chatting and realised we had the same needs emotionally, financially, we needed to do something and that is how K.W.A was started. (Formally called The Joint Connection).
Kristin and I approached the Arthritis Foundation in Auckland and expressed the need for a support group which we were prepared to run. They were supportive of this and gave us one of their rooms to hold our meetings in once a week. It started off with Kristin Kennedy, Phil Donnelly, Sara Downs (who we still meet regularly for a coffee), Angela Wadham myself Rhonda Butler, the late Maureen Purdom and very soon after Karen Derrick. We formed friend ships and most importantly our children had someone to talk to, we were no longer alone. This was run voluntarily by Kristin and me on virtually no money and what little the Arthritis Foundation could spare. Suzanne Paul got on board for a short time giving a small donation. The suburban newspaper came and took a photo of the foundation group of children to bring awareness.
As Richard grew into adult hood his Arthritis remained manageable so I felt it was time to stand down from running the support group and a huge thanks to Maureen, Karen and Phil for taking over the running of K.W.A. The group has continued to grow from strength to strength and by taking it to the next level with xmas parties, outings, trips and camps.
Without the community support and donations this would not be possible. The need for these children is so great as they are getting younger and younger; living with the feeling of cut glass in your joints every day is certainly no fun.
Richard is now 24 years old and has grown into a fine young man, with nothing holding him back, but the physical scares still remain, he cannot kick a Rugby ball, kneel on his knees and his fingers still get sore, he still can give us a weather report from his Arthritis. It is always in the back of his mind that it is not a matter of if but when it will return. I still receive the newsletters and now work at Waitakere Hospital in the Paediatrics Ward and continue to support Kids with Arthritis. This is my story in very brief Rhonda Butler joint founder of K.W.A.