DESPITE being unable able to smile, Hampton Park Primary School student Jack Lawrance was full of emotion last week as teachers, students and family celebrated Moebius Syndrome Awareness Day on Friday.
Teachers Amanda Fowler and Katrina Merrells and Jack’s mum Linda set up the day in honour of her son, who was born with the rare congenital condition that affects the sixth and seventh cranial nerves.
Five-year-old Jack has difficulty forming facial expressions, blinking, moving his eyes from side to side and speaking.
The awareness day, which is normally held during school holidays in January, was initiated by Jack’s two teachers to raise awareness of the syndrome at the school.
Mum Linda said it was a fantastic idea and she was happy to have a supportive network around her son.
“His friends are always on school holidays when the actual day is held on January 24, so this is a great way to help spread awareness of his condition so his friends and their families will know why he is a little different,” Mrs Lawrance said.
“When I've spoken to others who have grown up with Moebius Syndrome they often talk about how everyone thought they were also mentally handicapped, which is absolutely not the case at all.
“It is easy to label people when we don't understand them, which is why I've been working hard to spread awareness of his condition so that others will know Jack has feelings, even if you can't always see them.”
Mrs Lawrance has also written a book titled Smile for Me, which explains the syndrome to children.
“The book has really helped Jack to understand his condition which is very hard for a five-year-old,” she said.
“On more than one occasion this year I have had to console Jack when he has been upset after a bad day and told me he doesn’t want to have Moebius syndrome anymore.
“He wants to know why he can't be like other kids, he doesn’t want to wear glasses or have eye-drops all the time but reading through the story and also searching websites for information about other people just like him around the world has helped him get through those lonely times where he's felt so isolated.”
Moebius Syndrome Awareness Day was celebrated with a visit from Fat Cat, a lap-a-thon raising funds for Telethon and a sing-a-long.
- To find out more about the syndrome or to buy a copy of Smile for Me please visit www.manyfacesofmoebiussyndrome.com.