Meet Maddy and Briella – two bright and bubbly sisters who are making the most of their childhood and the time they’ve missed, thanks to the support of people like you.
Born with a rare and non-lethal form of dwarfism called diastrophic dysplasia, Maddy and Briella live in Sydney with their parents, big sister Lana, and dog Mushu.
Despite frequent doctors’ appointments and spending more time in hospital than they’d like, Nicole says the girls are typical, playful children.
“Like any other family, we deal with stubbornness, tantrums and sibling rivalry,” Nicole says.
“Maddy is a bit of a joker, loves sport at school and is exuberant. Briella’s a lot more serious and loves dinosaurs and reading.”
One debilitating challenge Maddy and Briella have faced due to their dwarfism is a spinal deformity called kyphoscoliosis. Their spines were curving sideways and bending forwards. If left untreated, this could eventually have crushed their lungs. So, in 2018, both girls were admitted to The Children's Hospital at Westmead, where they spent more than six months undergoing a life-changing procedure.
“The hospital was amazing at supporting Maddy and Briella,” says Nicole. “They felt like they were little celebrities. Everybody loved them. Everybody was on hand to help them.”
The first stage involved putting the girls in halo gravity tractions to help straighten their twisted spines. Maddy explained how the pair would get fitted with their metal halos - "like what an angel wears" - and going through it together meant they didn’t feel scared. They share an unbreakable bond.
The procedure was not without risk. The surgeon had to attach a lightweight metal ring to each of the girls’ skulls with small pins, and then gradually stretch their spines in the months ahead.
“You are moving vertebrae around,” says Nicole. “If vertebrae move around in the wrong way, you could give somebody a spinal cord injury, in a worst-case scenario.”
But thanks to kind people like you, the girls could get the safest, healthiest outcome. It’s the community’s support through vital funding that has enabled the Kids Research EPIC Lab team to use 3D technology to improve the quality of care of children. They created 3D models of Maddy and Briella’s skulls to guide safe pin placement for their halo tractions.
“The areas of the skull that were a little weaker could be identified and they could avoid those areas with pins,” explains Nicole.
The sisters spent six months in hospital, never taking their halo tractions off, even while sleeping. Afterwards, they each endured an eight-hour marathon spinal fusion surgery to try and prevent the curve in their spines returning. 3D modelling was also used to identify the safest place to guide the drill bits into the vertebrae, making the surgery a lot safer.
Nicole says, ““If Maddy and Briella had not had access to this treatment, their spines would have deteriorated, limiting the quality and even the length of their lives. To access these safe, innovative interventions has really given them a future.”
For the past four years since their surgery, Maddy and Briella have made the most of their childhood, attending school camps, birthday parties and even learning the trumpet!
While the family are now preparing for Briella to undergo another spinal fusion surgery in 2023, Nicole and Bernard know their daughter is in the best possible hands thanks to the support of people like you.
“I want the girls to have the opportunity to have a career, or go to university, or get married - all the life opportunities any other child will have. What happens for them now will determine what kind of futures are open to them,” Nicole says.
To help give all kids the childhood they deserve, donate to SCHF’s Sydney Sick Kids Appeal.
Funds raised this tax-time will go towards the area of greatest need – whether that’s more cutting-edge technology, positive patient experiences or groundbreaking research like the work taking place in the Epic Lab!
Donate to Sydney Sick Kids Appeal 2023 to make a difference today.