Eight-year-old Mikayla is the miracle child her parents never thought they would have.
They’d tried for seven years to have a baby, and when Mikayla was finally born they couldn’t contain their excitement or pride. The fact she had Down syndrome was secondary.
“I think having a child with Down syndrome actually empowers the parents, because you have to be there to be strong for your child, and you have to be standing up for your child,” mum Kylie White said.
“If there was a magic pill to fix Mikayla I don’t think I would.
“I wouldn’t take away her personality because I love her and she brings so much to our lives – so much happiness, so much joy, so much love. But I would take away her challenges. Learning new things is quite difficult.”
Down syndrome, which occurs when there is an extra copy of chromosome 21, is the most common biological cause of intellectual disability. About one in 1000 children are born with Down syndrome in Western Australia each year.
Children with Down syndrome have certain physical characteristics and can experience a range of challenges. Some cannot speak or may have behavioural problems and need much more support. Other children with Down syndrome have greater functioning and will be able to live independent lives as adults and work productively in the community.
“You could say it’s a childhood disability that doesn’t need to be considered a disability,” The Kids child disability researcher Dr Jenny Downs said.
Dr Downs said while there was no cure for Down syndrome, research continued to improve understanding of the condition and help find ways to improve the quality of life for those with it.
“Our research focus is on looking at how we can better understand Down syndrome, and in particular, how we can strengthen and build quality of life,” she said.
“What we can do is help children to reach their full potential – and as they grow up, help them to achieve satisfying and productive adult lives. That’s the goal.”
Mum Kylie said members of the public often had preconceived ideas of what children and adults with Down syndrome were like.
“More research into Down syndrome, and into other disabilities, will give the public the knowledge they need to know that these kids are just the same as them, they just have a few more challenges in their life,” she said.
The Kids Research Institute Australia has one of the only population-based resources in the world dedicated to intellectual disability – the Intellectual Disability Exploring Answers (IDEA) database – and has additional specific research projects focused on Down syndrome, Rett syndrome, Prader-Willi syndrome and the CDKL5 Deficiency Disorder.
For more information about our research into Down syndrome, visit our topic page.