Faith, hope and joy for the Luks

Behind the big smiles and infectious laughs of Maddy and Briella Luk is a fierce determination to keep up with big sister Lana, 7.

Nicole and Bernard Luk with daughters Lana, 7, Maddy, 6, and Briella, 2. Pictures: Peter Kelly

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Behind the big smiles and infectious laughs of Maddy and Briella Luk is a fierce determination to keep up with big sister Lana, 7.

Maddy, 6, and Briella, 2, were born with diastrophic dysplasia, a rare form of dwarfism.

The genetic condition is autosomal recessive, meaning parents Nicole and Bernard are carriers and each of their children had a 25 per cent chance of inheriting it.

Diastrophic dysplasia mainly affects the girls’ mobility and fine motor skills, and they also wear a brace for 20 hours a day to protect and support their spines.

The Luks, who moved from Hong Kong to Glenhaven at the end of 2014, have battled numerous challenges but take each one in their stride.

Maddy, a bubbly kindergarten student, needs major spinal surgery but the family faces uncertainty over where the surgery will take place.

Mrs Luk said Maddy’s surgeon The Children’s Hospital at Westmead has concerns over whether spinal cord monitoring — to ensure no damage is done to Maddy’s spinal cord during the operation — at the hospital is sufficient.

The family have been in talks with The Sydney Children’s Hospital at Randwick to see if the surgery can be done there instead.

If not, they will need to travel to Hong Kong for the operation — something Mr and Mrs Luk do not want to do as it would involve uprooting their family for months.

“I think that having surgery here will be more bearable — not just for the kids but for the whole family,” Mrs Luk said.

“But of course we can’t do that if that is putting her spinal cord at unnecessary risk.”

Mrs Luk has documented the highs and lows of living with diastrophic dysplasia on a Facebook page called Faith, Hope, Joy — a combination of the girls’ middle names.

Mrs Luk began a blog and the subsequent Facebook page when she was pregnant with Maddy “as a way of keeping family and friends informed”.

“People can’t support you unless they understand, but I didn’t want to have to tell that story one million times,” she said.

The page has since grown into a support network as well as raising awareness about the condition, with more than 1500 followers from around the world including other families affected by dwarfism and medical professionals.