It is almost two years since I caught up with the Luk family from Glenhaven.
Nicole and Bernard have three daughters and two were born with diastrophic dysplasia dwarfism.
Lana is the eldest (9) and was born perfectly healthy, and Maddy (7) and Briella (4) have the condition.
The three girls attend the Pacific Hills Christian School in Dural, which they love. “The school has made the inclusion of children with disabilities a priority for decades and they go out of their way to help Maddy and Briella, and also make sure Lana is on track,” said Nicole.
This year will be a harrowing, but rewarding one for the family. Maddy and Briella are about to go into Westmead Children’s Hospital to have several stages of intense surgery to straighten their spines.
“Maddy was on track to have surgery a couple of years ago before she hit a growth spurt but we had some complications and it didn’t happen. When we were discussing Briella’s surgery with the surgeon he suggested that they do them at the same time,” Nicole said. “It will be really intense, but in the end we think it will work better for us as a family. The girls will go through surgery and rehab together, and hopefully we will only experience this once.” Surgery will be in several stages and the first part is halo technology, where a metal frame is attached to the girls’ heads to stretch their spines. After that there will be several operations that will fuse the spinal bones together.
Another two or three months of rehab will follow. “The school are so supportive. Last week when the girls were finishing up for a few months the staff gave them a lovely farewell party, a soft toy and books,” Nicole told me.
“When surgery was cancelled and I told Maddy and Briella that they would be going back for another week or so they asked me wide-eyed if they were going to get another party!” It only took the school a mere two weeks to raise funds for a telepresence robot, a smart phone controlled robot that the girls can operate from their hospital beds or living room. This will allow them to keep up to date with school work and keep in touch with staff and class mates.
We wish the whole family all the luck in the world in the months ahead.