Eleven families found support, understanding and a new community at Drummond House, Manly, when they attended Camp Twinkletoes 2018, our annual two-day camp for parents of children living with juvenile arthritis.
This year the camp theme was Resilience with mums, dads and even aunties attending four education sessions presented by health professionals. In the meantime, their collective 19 children aged between 2 to 12 years enjoyed a wildlife petting zoo, craft, kids yoga, massage, paper aeroplanes and a visit to the beach.
Camp Twinkletoes Co-ordinator Julie Wakeman, who is an Occupational Therapist with the Arthritis NSW Health Services Team, said the camp met its objective to educate the parents on the many aspects of juvenile arthritis.
‘We had Paediatric Rheumatology Nurse Anne Senna, Occupational Therapist Mandy Hanna, Clinical Child Psychologist Meg Farnsworth and Child Life Therapist Kristy Goymour give the parents a comprehensive rundown of the medical, psychological and behavioural features of juvenile arthritis,’ Julie said.
‘The presenters also gave valuable advice on how to manage children in hospital, comfort them at home, how to cope well at school and other practical suggestions. The parents were given the chance to ask the presenters questions and then to network with other parents to compare notes and exchange stories.’
‘One of the dads told me at the end of the camp that he couldn’t have learned the same volume of relevant information he learned from our presenters if he had tried to research it for 12 months,’ Julie said.
‘There were other areas that the parents told me were worthwhile such as understanding pain better, the value of approaching your child’s school and the adjustments required, techniques for stress reduction and how to look after themselves as a family.’
Lisa Byrnes returned to the 2018 camp with her sister Kate and five-year-old daughter Madison who was diagnosed with Oligoarthritis when she was two and a half years old. ‘Last year we met a lot of families and we’ve stayed in touch. This year, there were children younger than Madison and I was trying to help the new parents,’ Lisa said.
‘I was interested in learning ways to reduce pain and I heard in the education sessions that kids with chronic pain will also have anxiety, which will possibly generate angry outbursts. The Clinical Psychologist gave us ways to reduce both Madison’s and my own anxiety. The children’s program taught her massage techniques, which is great if she’s at school and she can help herself.’
Rebekah and John Murray are parents to nine-year-old twins Mikayla and Evangeline and four-year-old Ethan. The family attended Camp Twinkletoes following Mikayla’s juvenile arthritis diagnosis in January this year.
‘The girls are fraternal twins and although both had the virus that triggered Mikayla’s arthritis last November, Evangeline didn’t develop the condition. She wasn’t keen to come to camp but the children’s program was so good, she had fun and felt included. We’ve worked hard to make sure the twins’ relationship isn’t affected by the arthritis,’ Rebekah said.
‘Thanks to the education sessions, we have a bigger vision of what’s possible, of where Mikayla could be in a year’s time. Many of the camp volunteers have juvenile arthritis and this really impressed Mikayla. They showed her that despite their condition, they can get on with their lives, so she realises that she can too.’