Little girls with big dreams
These sisters have a rare condition that means they will never grow
Most little girls ask for ponies and dolls on their birthday, but when Madeline Luk turned five she longed for something much bigger.
“She asked when she would grow taller,” reveals her mum, Nicole, 35. “It broke my heart.”
Both Maddy, now six, and her three-year-old sister Briella have diastrophic dysplasia, a rare form of dwarfism that means they will only grow to about 90cm tall.
“We didn’t know anyone with dwarfism before having Maddy,” Nicole says. “It was a huge shock when she came along, and we discovered she had the condition.”
Adding to their surprise, Nicole and her husband Bernard, 37 – both of average height – already had a daughter, Lana, who wasn’t affected by the condition.
But while Maddy’s diagnosis came out of the blue, Briella was another story. “We knew she had a one in four chance of inheriting the same condition as Maddy,” explains Nicole.
Even though the girls were still so young when Maddy asked the question, Nicole and Bernard decided being open with them about their condition from the start was for the best.
“It would be cruel to let her believe she’ll grow, so we had to tell her the truth,” says Nicole.
Although the sisters know they will never be the same height as other kids, their size has little impact on their characters.
“For such small girls, they both have huge personalities,” Nicole laughs. “Maddy is cheeky and loves being the centre of attention, while Briella is more cautious and serious, especially when she meets new people.”
Nicole and Bernard, from Glenhaven, NSW, now know they are both carriers of the rare dwarfism gene, and have decided not to try for any more children, given the risk they would inherit the condition too. Although they love their girls just the way they are, they admit it’s given their babies a tougher start to life than most.
Maddy was born suffering breathing problems, and spent a long four months in hospital before being allowed home.
“The condition has heaps of complications, including club feet and scoliosis, which Maddy has,” Nicole explains. “Briella suffers with similar effects too, but she’s had an easier ride as the doctors knew what they were dealing with this time around.”
Both girls have also had surgery to help manage complications caused by their dwarfism. They’ve had their cleft palates corrected, and Briella has had four surgeries to repair her club feet.
“Every time they go in for surgery, it’s really heartbreaking,” Nicole says. “They’re so tiny I feel like they might break. But they’re way tougher than they look.”
Maddy is also due to go in for spinall surgery soon, to treat herh scoliosis, something Briella is also likely to face in the future.
“That one is the most nervewracking procedure, as there’s a chance she’ll be paralysed if it goes wrong,” Nicole says. “But if she doesn’t have the surgery, her back will become too curved for her to walk or sit down, so it’s very important. We just try not to worry about it too much.”
Despite their health issues and small stature, both girls are doing fantastically well. Their biggest challenges revolve around their height, which makes simple tasks such as reaching high objects or walking long distances tough.
“Maddy has a wheelchair she uses a few days a week,” explains Nicole. “Whether it’s a chair or a walking frame, they’ll always need mobility help because their little legs make distances tough.”
At home, Maddy and Briella use stools and chairs to help them reach toys, raid the pantry or wash their hands. Both girls have become expert improvisers,
‘They’re so tiny, but they’re way tougher than they look’
using overturned plastic bins as makeshift stepping stools and brooms to point to any out-of-reach snacks they want.
Of course, the most concerning thing for Nicole was wondering whether her girls would be able to lead a normal life.
“One of my first questions when the doctors told us about Maddy’s diagnosis was could she grow up and be a mum one day?” Nicole says. “Luckily the doctors have assured us she can.”
And Nicole says life at the Luks’ is just like any other family.
“We try not to let dwarfism define our day-to-day living,” she says. “We have the same sibling rivalries as everyone else does, and Lana definitely doesn’t hold back on her younger sisters!”
She says Lana, eight, is a blessing to their family. “She’s in the unique position of being the one without a disability, and at times that places a lot of pressure and responsibility on her young shoulders.
“But they love each other and Lana is quick to point out they are sisters, friends and family all in one.”
Despite the uncertain road ahead, the family stay positive about the future.
“Dwarfism does bring its challenges, but you can still have a good life,” says Nicole. “Of course my girls will face difficulties – but their lives are very much worth living.”