A walk that means the world

17-year-old Ethan Connolly-Kelly takes pride in being a self-determined young man. Ethan has been attending Mates Weekends at Very Special Kids for several years now, with his best friend Ryan.

Ethan’s father Justin see’s the weekends as an invaluable activity for the boys, which is why he and a group of his friends will be participating in the Upstream Challenge this year, for both his son Ethan and Very Special Kids as a whole, on the 11th of November.

The challenge involves a 20 km or 50 km walk along the Yarra River and will raise money to fund the Mates Weekends program at Very Special Kids.

The weekends are designed to bring children together who have high cognitive ability, which are facing similar physical challenges, and ensure they have experiences that they normally wouldn’t have the opportunity to.

Whilst Ethan is very adamant about being independent, he unfortunately however, has conditions that have made it exceptionally hard for him.

Ethan was born with hypopituitarism and hypoglycaemia, which meant he was susceptible to having adrenal crisis if he became unwell. In 2003 when he was just three-years-old this resulted in a stroke, and since then he has suffered from epilepsy, vision impairment, mobility disabilities and intellectual delays.

It’s only in the last 6 months that Ethan has been able to come out of his wheelchair for short walks, due to extensive rehabilitation and physiotherapy, and the unwavering dedication of his family.

“Despite the things that hold him back he is exceptionally outgoing, resilient and determined” explains his father Justin, who lives with Ethan and his grandparents in Seaford.

After Ethan’s stroke he was in an induced coma and ended up being in the children’s hospital for 64 days. After this intense time Justin was put in contact with Very Special Kids, and found access to the Hospice for respite exceptionally helpful. “There was nothing out there for children who had suffered strokes, I was a young parent and I felt extremely isolated dealing with this. Having Very Special Kids there created a safety net and gave us a sense of connection, which is extremely vital to both of our well-beings” said Justin.

Since then Very Special Kids has been a constant support to the Kelly family, and Justin explains that “it’s difficult to put in to words the joy that Very Special Kids has brought to our lives, there were things that I couldn’t give my son, but they were able to provide, and it has been amazing.”

Mates Weekends are a great chance for teenagers with limiting conditions to socialise without their parents for a change, but still have the support of carers when they need. It’s a chance for these teens to socialise, feel liberated, and experience things they wouldn’t usually, with others who are in similar situations.

“Mates Weekends gives Ethan a confidence that flows through to other areas of his life. He gets a chance to share normal, exciting stories, and feel more like other teenage boys” said Justin.

If you would like to help provide invaluable experiences for kids like Ethan, please head here to register for the Upstream Challenge 2017.

“We are truly thankful for Very Special Kids, the experience has been invaluable. We look forward to trying to give something back to them at the Upstream Challenge.”