Mark & Skye
My name is Skye, and I’m Mark’s younger sister.
Mark is now 61, and for much of his early life, we didn’t know what his diagnosis was. He lived at home until around age five and attended a mainstream preschool. Our mum noticed early on that Mark wasn’t speaking like other children and was an incredibly restless sleeper — something that hasn’t changed much over the years!
What did your diagnosis journey look like?
Mark was officially diagnosed with Angelman Syndrome at age 28 by Dr Ellie Smith, following genetic testing that involved our whole family 10 years earlier. At the time, he was the oldest known person living with AS. It was a long journey to get answers, but finally having a diagnosis helped us understand Mark better.
What was the initial reaction when you received your children's diagnosis?
Honestly, it gave us an answer — but it didn’t change much in terms of how we cared for or loved Mark. We had already adapted to his needs and embraced who he was long before the diagnosis came.
What is the biggest challenge you encountered with the syndrome?
One of the toughest aspects has been managing Mark’s behaviours, especially during school holidays when he was home full-time. We experienced many broken windows and pulled hair — it was a challenging time for our family. But we learned a lot about patience, resilience, and unconditional love.
Despite all the challenges, is there anything that you are grateful for?
Mark brought so many beautiful connections into our lives.
We made lifelong family friends through him and spent countless days at Balmoral Beach, where he loved playing in the sand and swimming in the baths. Growing up with Mark taught us to truly accept people for who they are and to see the unique gifts in everyone.
Mark is the most affectionate person I know, and that’s something we treasure deeply.
“It’s different for me as a sibling rather than a parent but from my experience I’d say, it really does take a village to raise a child
and it takes an even bigger one to raise an angel.
Don’t be afraid to welcome that village in.
This journey is a marathon, not a sprint, and it’s important to do what’s best for your whole family.
Lean on others, ask for help, and know that you’re not alone. I believe that is what our mum appeared to live by and she was pretty amazing!”
“People with Angelman Syndrome are extraordinary — they’re beautiful, intelligent, and full of joy. Always look beyond the disability and see the unique spirit of each angel. They have so much to offer the world.”
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