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.
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.