real life

"Doctors told me my child would never walk, never talk."

She looks like a normal toddler taking her first steps, but there’s so much more to her story.

A video was shared on Facebook of a little girl taking her first steps. She’s clearly delighted at her new trick and giggles and laughs as she walks, prompted by her proud mum. It is immediately clear that this girl has achieved something far greater than most children who are learning to walk.

It turns out her name is Maddy and when she was born, doctors told her parents that she would never walk and never talk. She was diagnosed with a rare form of dwarfism. At the time, Aussie parents Nicole and Bernard Luk were living in Hong Kong. Maddy was the first child to be diagnosed with diastrophic dysplasia there.

1 in 100,000 children will be born with it.

With this in mind, the video of her proud steps is even better.

Nicole and Bernard have three daughters, Lana who is six and doesn’t suffer from the condition, Maddy, the star of the video who is four and who has diastrophic dysplasia, a rare and often debilitating form of dwarfism. Youngest daughter Briella who is 17-months-old and also has the condition.

The parents never knew they both were carriers of the gene that causes the condition. Now living with it is a reality.

It all started when Nicole was pregnant with Maddy, and she’s taken the time out to talk to us about living with dwarfism. Problem births don’t get much worse than this, especially when you’re giving birth in a place that has never seen it before.

Q: How challenging has life been for her and for you?

A: We have had plenty of trials! By far, the hardest time was my pregnancy with Maddy. At that stage, we had very scary news (they thought she might have had a type of dwarfism that is not compatible with life, so we were preparing ourselves for the possibility of her not living very long). In the early stages of diagnosis, it is often very hard to see any light at the end of the tunnel. Since birth, Maddy has been very healthy. She has only had one surgery.

Both of the Luk's youngest daughters suffer from this rare and debilitating type of dwarfism.

Q: Maddy looks so great in the video, just a gorgeous and happy little girl delighting in her ability to walk. Is the worst over?

A: Maddy will be having two pretty major surgeries within the next couple of years, which is quite stressful! She has a pretty bad scoliosis and will need rods put in her back to straighten it, and also she needs her hips and knees to be realigned. It will be our first big surgeries and we are not looking forward to them! They are necessary though - without them, Maddy's mobility will decrease and she would be in a lot of pain. It's hard to think of such a small child having to go through such major surgeries.


Q: Maddy and Briella are both developmentally delayed. How hard was it for Maddy to learn to walk?

A: I posted this video because I am continually amazed at the way Maddy exceeds some of the early expectations that doctors had for her. I wanted to show people, 'Doctors said she wouldn't be able to do this, but look at her, she doesn't care what the doctors said!'

Q: What is Maddy like? She looks like a bundle of energy.

A: Maddy loves performing and showing off. It does take a lot more effort for her to run and jump, and she gets very excited when she learns a new skill (for example it's only been in the past few months that she has learned to walk up and down small steps without holding on to anything. When she does it, she beams! I think she's very proud of herself because she's had to work hard to do those things).

Q: She's also very much just like your typical little girl, despite all the obstacles she's faced.

A: Maddy is spunky and determined with a magnetic personality - she has a way of drawing people in. She loves being around people. She can be amazingly patient and perseveres with things even when it is difficult (maybe a result of hours of therapy?). She currently loves "doing her homework" (preschool activity books) and hoarding all her toys (and candy stash) into her numerous hand bags.

Q: Maddy goes to mainstream preschool. How do you see her future panning out?

A: I hope she will be able to achieve full independence and acceptance - both self-acceptance and acceptance by her peers. I don't want her to use dwarfism as an excuse for not reaching her potential. I want her to live a "normal life" (whatever that is) and to be happy, surrounded by people she loves and who love her.

To find out more about the condition or find out how you can help, visit Understanding Dwarfism and Lifestart. You can keep updated on Maddy's journey on the family's website and on Facebook.

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