Pictured: Leana with her parents, Jane and Hank Eikelboom, and The Kids researcher Professor Jenny Downs
Leana Eikelboom was two and half years old when she was diagnosed with Rett syndrome. Now 31, her lived experience – and that of her Mum, Jane – has helped shape a new resource that’s helping people with Rett syndrome lead more physically active lives.
Affecting approximately 400 people in Australia, Rett syndrome is a rare neurological disorder that occurs almost exclusively in girls and affects mobility and development, impacting everything from walking and talking to eating and breathing.
Physical activity is vital to help kids with Rett syndrome maintain good health but research led by Professor Jenny Downs, Head of Child Disability at The Kids Research Institute Australia, has shown many with Rett syndrome participate in limited physical activity and live sedentary lives.
“For many families with a child with Rett syndrome, their days are already incredibly busy with caring responsibilities, so getting time for physical activity can be a challenge,” Professor Downs said.
“Our previous research showed that for many people with Rett syndrome, they are sitting or lying down for up to 83 per cent of their day.”
Prompted by these findings – part of a 12-year pipeline of research aimed at better understanding physical activity in Rett syndrome – Professor Downs, her team and international colleagues have worked with families including Jane and Leana to develop ActiveRett, an online resource designed to help families, carers, therapists, and teachers support people with Rett syndrome to live more physically active lives.
ActiveRett is geared around using everyday routines to increase physical activity – in particular, focusing on the amount of time spent standing or walking. It is used by families, carers, therapists and schools.
The idea behind ActiveRett is using daily activities around the home, school or community to achieve an extra 10 to 20 minutes of physical activity each day – anything from walking around the shops, standing to brush teeth, or doing chores around the house like setting the dinner table.
“It’s called Uptime – opportunities for standing and walking rather than sitting and lying. It would be phenomenal if all girls in the world with Rett syndrome were ‘up’ for an extra 20 minutes a day. All those minutes add up and there would be an important population health effect.”, Professor Downs said.
Jane Eikelboom was one of six parents from around Australia who co-designed ActiveRett.
“We worked with Jenny and Dr Michelle Stahlhut (a physiotherapist from Denmark) to bring our ideas to the table – the sort of activities that worked for us as a family in getting our daughters to be more active,” Ms Eikelboom said.
“As a parent, you want to do everything for your child, and you often feel like you have to do as much as you can to give your child the best life.
“The great thing about ActiveRett is it’s about everyday activities. It’s reassuring for parents that you don’t have to do big things – you don’t have to enrol in something or do things after school, it’s the normal everyday things that can make a difference.
“You just need to be aware of what you’re doing and incorporate movement. Anything around the house can become a movement activity.
“I don’t think anything like this exists, it’s a great resource backed by research and families’ experiences.”