
By Rebecca Fraser
YOUNG Ethan Hanley’s infectious smile and affectionate nature belie the many years of pain and suffering he has endured.
Not yet five years old, the much loved Narre Warren boy has undergone open heart surgery twice, faced kidney cancer, countless other illnesses and is now outgrowing his heart and lungs.
At a young age Ethan was diagnosed with an extremely rare genetic syndrome that leaves sufferers vulnerable to more than 187 medical conditions and diseases.
Unfortunately, young Ethan has been dealt with the more life threatening ones and about three months ago his family received the news that his condition was palliative.
This means Ethan now lives month by month.
But life is not all about operations and sickness for the energetic boy and his loving family – parents Luke and Jo and sisters Erin, 6, and Adele, 3.
Last Saturday, 2 September, more than 300 people converged on Kalora Park in Narre Warren North to give the Hanley family a surprise they will never forget.
Close friend Narelle Graham organised the family fun day and fundraising event to allow close friends and family to catch up with Ethan and also raise funds for the boy’s new trust fund.
Westfield Fountain Gate provided a sausage sizzle, catering, entertainment and decorations for the day and many other local businesses donated goods for an auction and raffle.
The event has already raised almost $14,000 for the family and the funds will help ease the financial plight of the family who have been forced to refinance their home twice to cover medical costs.
Ms Graham said she had decided to organise the fundraiser after visiting Ms Hanley at home one day.
“I walked in and she had just gotten off the phone. She was upset because they could not pay the bills.
“I wanted to do something for them because I could not even begin to imagine what this would be like,” she said.
Ms Hanley said travel costs, such as petrol and parking to their many medical appointments, and other every day costs just continued to add up.
Ethan’s condition has also affected the couple’s ability to work.
The family said they have been overwhelmed by the generous support they have received.
Ms Hanley said Ethan and their entire family had greatly enjoyed the family fun day.
She said Ethan slept a lot due to his illness but stayed up until 11.30pm after the fun day and was “totally pumped”.
“Thanks to everyone for the support. It has just been overwhelming. It is hard to explain how much it means to us,” Ms Hanley said.