‘Tayah was five when, one evening, she started limping down the stairs and crying in pain. I didn’t know what to think, so I took her to the hospital.’
Tayah and her family had to wait for months in confusion before she was diagnosed with juvenile arthritis. In that time, her mother Lauren couldn’t help her or ease her pain.
We’ve spoken to many families dealing with juvenile arthritis: single parents, couples with siblings, and extended families with grandparents playing a hands-on role. They have all experienced the stress of seeing their young child in inexplicable pain, suddenly unable to get out of bed, walk or even feed themselves. They’ve told us of their initial confusion, then frustration as they have sought treatment and advice only for their child to be misdiagnosed or be told that nothing’s wrong.
Tayah, who is now 10, is one of the 3,000 children in NSW who live with juvenile arthritis. Her mother Lauren is one of the thousands of parents who have had to search and wait for answers while comforting a child in pain.
We know parents want to ease their children’s feelings of isolation as much as they want to ease their pain.
That’s why the Twinkletoes Family Day run by Arthritis NSW is so important to families who are living with juvenile arthritis. It won’t be possible without your help.
Twinkletoes welcomes parents, siblings, aunts and grandparents to come together and share their experiences with this unpredictable and unsettling condition. Once Twinkletoes was a weekend camp for families of very young children with juvenile arthritis, now it’s a one-day event that connects families of children up to 13-years-old.
This year, Arthritis NSW hosted the event at Taronga Zoo where 50 adults and children relaxed, had fun and settled in for some candid conversations.
Many families at Twinkletoes voiced their trouble getting their child’s school to recognise their arthritis. These parents want very much to help their children be seen and heard, when too often they are ignored, or dismissed as weak or even worse, untruthful. We’re proud to say that our team always reassures the children that they can speak up about their arthritis if they want to.
We were delighted to hear another parent, who has brought her daughter to Twinkletoes over the past several years, share that her daughter had grown in confidence and now speaks up for herself at school, offering to explain what arthritis is to any student or teacher who questions her condition.
This is why these families need your support. Today, we ask if you can show your kindness to every family in NSW who has a child with juvenile arthritis.
Your gift will help make Twinkletoes Family Day accessible to more parents who need support and to children who would thrive with the connection to other children with arthritis.
When we think about Twinkletoes Family Day and the good it brings to families dealing with juvenile arthritis, we’re determined to raise the $25,000 needed to offer the event to as many families who need it. If you donate today, you will help that become a reality. Thank you.
Alex Green
CEO
Arthritis NSW