A community of supporters for Far North Queenslanders affected by rare conditions.
3 or 5km options (or show your support from the marquee)
$15 Adults, $5 kids over 5.
Lots of great prizes donated by local businesses
(you must pre register to be eligible)
Sausage Sizzle, Icypoles and drinks.
Olivia - 8p inverted duplication/deletion
Olivia is a happy little girl with a rare chromosome 8 error called 8p inverted duplication/deletion syndrome.
Inverted duplication and deletion of 8p, known as inv dup del 8p, is a rare genetic condition that is estimated to occur once in every 10,000-30,000 births. In people with inv dup del 8p, there is both an extra copy (duplication) of part of the genetic material that makes up one of the body’s chromosomes - chromosome 8 - and a missing copy (deletion) of another part of chromosome 8.
More than anything, Olivia loves to listen to music and sing. There are many basic things Olivia is still learning to do, but her life is full of people who care for her and she is slowly moving forward.
Henry - Dup15q
Henry is 9 years old and has a genetic condition called Dup15q. Henry is non verbal, intellectually impaired and suffers multiple seizures. Henry loves music, bubbles, playing in water and ‘The Bear’ book series.
William, his older brother is 12 years old and is Henrys real life superhero, he started a page called Superheroes for Super Dupers where he advocates for Dup15q and his brother.
Dup15q, is caused by duplications on parts of the 15th chromosome. Read more about Dup15q here ~ https://rarediseases.org/rare-diseases/dup15q-syndrome/