Child Spotlight: August Dane

 

  1. What is the name of your child’s diagnosis?

Our little, now four-year-old, wonder August Dane was diagnosed with 15q13.3 microdeletion syndrome when he was 9 months old.

2. Tell us a bit about how this affects your child

We started noticing he was missing important milestones in the first months of his life, and luckily an amazing doctor at Stollery in Edmonton took our worries seriously and we got genetic testing done. August has developmental delays in all areas, speech, fine and gross motor skills and cognitive understanding, some minor, some more severe. He can walk, run and has started talking in 5-6 word sentences recently which is really exciting to see.

 

3. What have you learned from your child and being his/her parent?

Being his parent has taught myself and my husband so much including patience, the importance of slowing down to enjoying the little moments and finding joy in the simple things. We’ve also learned how to celebrate the small wins and milestones, or ‘inchstones’ as they sometimes feel like and that its ok to feel sad that your child’s life looks different than you imagined but that doesn’t effect your love or fight you have for your them. It is also teaching his two brothers that people can be different and that’s ok, everyone deserves a friend.

We have learned about hidden or unseen disabilities, where someone may look neurotypical but still have a disability that you may not see right away, and the importance of kindness to all. Having August has taught us that this is a journey that keeps on changing, the direction is not always clear and using all the resources out there, both the public ones in your local area and the many groups and communities, for help and guidance is so important, both for him and us as his parents. We are his greatest advocate and we take that role seriously.

August’s journey has just started, and we know there will be many hard days, months, and years ahead – but we also know there is support out there and with patience and love we will keep fighting to give him the best opportunities.

4. What is something that makes your child happy?

Some of August’s favourite things are his brothers, they truly love each other and having a big brother and a little brother give him all the encouragement and motivation to try new things and never give up! He loves dancing, swimming, animals, his Nana and Grandad oh and Paw Patrol of course!

5. If you could give any advice or guidance to a fellow mom receiving a new or similar diagnosis, what would it be?

August’s journey is ongoing and we don’t know what the future holds for him, we know there will be challenging times ahead but lots of good ones too! We know with support, patience and love we will keep fighting to give him the best opportunities to live his best life.

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