WENDY Andrew had never heard of the disease her son Tyler was diagnosed with at just one-day-old.
The Wilson mother had overcome a less than 5 per cent chance to give birth to a second child but her elation turned to terror when she was told Tyler likely had Hirschsprung’s disease.
The genetic condition means nerves are missing from parts of the intestine so stool cannot be passed through the bowel.
Mrs Andrew said Tyler was four weeks old when he had surgery to remove 20cm of his intestine and reconnect it to his bowel, which she described as “the saddest day of my life”.
“I was still in disbelief as to how this had all happened and was not educated on much about what the disease was at all,” she said.
That is something she and Tyler, now aged 10, want to change and will help raise awareness of the disease at the Walk for Hirschsprung’s Disease on September 15 in City Beach.
Tyler has seen myriad of health professionals over the past 10 years and requires six-monthly surgeon visits but Mrs Andrew said the lack of understanding among the general public was most difficult.
“He has endured so much and at such a very young age because most people generally have never heard of it or even want to understand it,” she said.
“He has been embarrassed by it, hurt by it and bullied because of it.
“He has been through a huge ordeal but above it all he is the most beautiful, strong, fun loving, cheeky little man who is loved and supported so very much.”
Wembley Downs resident Stefania Little, who along with daughter Samantha (9) has Hirschsprung’s, is organising the walk following the success of last year’s inaugural event.
The walk leaves Bold Park at 9am and ends at Kings Park followed by a barbecue cooked by former My Kitchen Rules contestant Jazzey Rooney, kick of the football with ex-West Coast Eagles players Adam Hunter and Kasey Green, face painting, sand card art activity and raffles.
There will also be teddy bears and cupcakes for sale, with money raised donated to Bowel Group for Kids.
Ms Little encouraged people to join the barbecue if they could not make the walk.
“I am so passionate about people coming to the walk to learn about Hirschsprung’s disease and getting to know the disease is real and out there,” she said.
Tickets cost $10 for adults and $5 for children and are available online.