Who Is Anya?

  • Strong-willed
  • Loves to read/write
  • Loves playgrounds
  • Intelligent

I'm a 14 year old girl from
British Columbia, Canada

I was born in August 2008. I have two older brothers, Noah and Cullen. In June 2020, I was diagnosed with Lamb-Shaffer Syndrome, an extremely rare genetic disorder that is defined as either the mutation, partial-deletion or full-deletion of the 5th gene of the 12th chromosome (the SOX5 gene).

Lamb-Shaffer Syndrome is EXTREMELY rare - only about 9 people have been diagnosed in Canada, with around 450 diagnosed worldwide. I'm unique! Because it's so rare, very little research has been done so far. However, there is a genetic investigative researcher named Dr. Veronique Lefebvre at the Children's Hospital of Philadelphia, who is studying SOX5, so we're hoping to learn more from that research!

I LOVE playgrounds! As I'm getting older, most don't work for me. So my parents created this foundation to build all-ages accessible & inclusive playgrounds. I can't WAIT for the first one to be built at Fuller Lake, near Chemainus, British Columbia!

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