Little Angels Bravely Face Nine Months In Hospital
Hopes that innovative surgery will straighten young sisters’ spines
What you need to know
- Maddy and Briella Luk have the rare genetic condition Diastrophic Dysplasia
- They’re undergoing innovative surgery called Halo Traction to straighten their spines
- The sisters are Ambassadors for Jeans for Genes Day
- August 3rd, 2018 is the 25th Jeans for Genes Day
7-year-old Maddy Luk and her 4-year-old sister Briella have had a pretty tough start to life.
Both girls were born with Diastrophic Dysplasia, an incredibly rare genetic disorder which affects their bones and cartilage.
Born with cleft palates, their condition means that they’ve developed dwarfism, and over time, an extreme curvature of the spine known as kyphoscoliosis.
But now they’re undertaking a radical treatment known as “Halo Traction”, which doctors hope will straighten their spines, and give them a chance at an easier life.
But the journey to that point is anything but easy. In April this year, the girls undertook intense surgery, where metal pins were drilled into their skulls and fixed to a ring – or halo – which sits around their head. The halo is attached to weights via a pulley system which slowly stretches their spine.
Once they can stand up straight and tall, they will undergo a spinal fusion.
The procedure means around nine long months in hospital recovering, which brings challenges beyond just their own physical recovery.
“We are exposed to so much trauma,” their mum Nicole tells The Project. “There’s so much pain and so many kids that don’t go home. So it’s just… that’s what’s really devastating.”
But bubbly Maddy keeps a positive outlook, and copes well with the pain.
“I get a bit of a headache, but then, um, it’s over.”
The Luks are grateful for the work done by the Children’s Medical Research Institute, which is constantly working to fight genetic diseases. In fact Maddy and Briella are ambassadors for Jeans for Genes Day, raising money for the Institute to do more innovative research.
Genetic disorders impact 1 in 20 Australian kids, but the specific diseases, treatments, and the impacts on the children and their families can vary enormously.
That’s why it’s research funding is so crucial.
Maddie and Briella will need continual monitoring as their bones grow, and possibly more surgical intervention. But thanks to medical research, their future now looks more promising than ever.
To support Maddy and Briella's Jeans for Genes Day fundraising campaign, visit their page here.