Emily’s Story

emilyEmily is 10 years old, she has a very rare condition, Koolen Syndrome.

Emily was officially diagnosed at the age of five years old, the eighth case, a total of 10-12 in Australia. There are a total of only 500 Koolen Syndrome cases worldwide.

With this syndrome, Emily has a moderate intellectual disability, severe speech delay, low muscle tone, ADD, ADHD and feeding issues. Emily has already had heart surgery for her condition.

“To work on every day tasks are a big deal for her. Emily’s condition is not as severe as some other suffers, as many other children have multiple syndromes associated with Koolen Syndrome.”

“Emily is a happy and fun loving child, and a bit of a chatter-box ,these characteristics are part of the syndrome, which makes her very fond to the people who meet her!” says Amanda, Emily’s mum.

Emily has been swimming since she was 6 months old in a mainstream swimming class, joining the Rainbow Club program when she was 7 years old, so with Rainbow Club approximately 3 years.

“A mainstream class didn’t suit a child like Emily. Her concentration was lacking and the ability to learn strokes wasn’t there. Since moving to the Rainbow Club lessons, it has been amazing to see the development in Emily’s swimming ability, with how far she has come in such a short period of time.

This I put down to the dedicated teachers, and the one on one teaching in the lessons. If she is distracted, you have to bring her attention back to the task. It’s not just once, it’s multiple times in a lesson. That’s what makes her ability to learn happen.”

“She has gone from not being able to do freestyle, to swimming confidently in a pool. We are so very proud of her. If we didn’t have the support of Rainbow Club, we wouldn’t be able to do the lessons for Emily, it’s a big deal for us.”