If you ask six-year-old Maddy Luk what she wants to be when she grows up, she’ll answer without hesitation – “a teacher, because I love to tell people what to do’’ and burst into hysterical giggles.
“She tells everyone that, all the time,’’ mum Nicole Luk laughs.
While other parents are desperately looking forward to the start of the school, Nicole is preparing for both Maddy and her four-year-old sister Briella to have spinal surgery within weeks.
“It’s a rough start to the year, that’s for sure.’’
This will be a big year for their family, yet Nicole will still mark an important date on the calendar.
On Friday 3rd August, Children’s Medical Research Institute will celebrate the 25th anniversary of Jeans for Genes and she is appealing for every student, teacher and school to get in early and sign up now for the big day
My kids are happy and in many ways just normal kids. That said, I do believe more research needs to be done into ways to improve their quality of life, both physically as well as socially.’’
Both Maddy and Briella have diastrophic dysplasia, a genetic disease. They were born with a cleft palate, have difficulty breathing due to the size of their ribs, and have developed kyphoscoliosis, a deformation of the spine.
Despite their challenges, Maddy loves school and is particularly looking forward to starting year 2.
“She uses a wheelchair and a walking frame to get around but is also very mobile over short distances,’’ she said.
She is a vibrant and happy child who brings joy to so many people around her. She loves swimming, she has just started learning piano. She even joined the school choir, without us knowing, and she does ballet as well. She’s an excellent reader, although if you were to ask her, she’d tell you that her favourite thing to do is to play the iPad or watch TV!
Briella is starting “prep’’ before moving into primary school in 2019. She doesn’t have Maddy’s confidence but looks up to her big sister.
“She is my cautious child,’’ Nicole said. “She is more of an observer than a participant at first, but she’s do amazingly well. She was very slow to develop speech, reaching less than the fifth percentile, but she’s made such incredible progress she’s on the 97th
Nicole said the idea of having two children with a disability was challenging, but the girls support each other. “We have these two kids with the same rare condition, so they can be there for each other.’’
Next month they will undergo spinal surgery on the same day. They will then be put in traction for a couple of months to straighten their spines. They may then need further surgery.
There are times the girls feel frustrated by their situation but are generally optimistic. “When Maddy was turning 5 the year before last, she asked me ‘When I wake up in the morning, am I going to be taller?’ I told her ‘Even though you will be a year older, it is still just one night. You’re going to be just about the same size as you are today. But you WILL grow taller in time, just not as tall as everyone else. You’ll always be smaller than other people your age’.
“She was devastated at the time – but that said, I think that because we had those conversations, she understands how she is different and even has a sense of acceptance and pride in who she is.’’
Nicole may have two children facing some massive challenges in the year ahead, but she can always see the positive – and believes that research may change life for her children and others.
“I believe it has made us all more accepting and understanding. Life isn’t fair and we all just need to play the hand we are dealt.’’
The Luk family feel very lucky and want to do whatever they can to educate others about the importance of medical research.
As part of the 25th
anniversary of Jeans for Genes, Children’s Medical Research Institute wants to raise $25 million for a new centre of collaboration, which will bring together research and hospitals to better help Australians kids affected by genetic diseases.
It may be months away, but you don’t need to wait until August to start helping. Mark Friday 3rd August 2018 in your diary now, sign up online at jeansforgenes.org.au
. Start thinking of inventive ways for your school to fundraise, whether it’s a cake stall for the kids or a daggy day of double-denim for the teachers, it’s all for a great cause!