Rare Finds Foundation launches Australian-first resource to help parents of children diagnosed with Tay-Sachs and Sandhoff diseases

Aaron Hurle says an Australian-first resource would have been invaluable when his family learned their little boy had a rare terminal disease.

Aaron Hurle lost his son Bodhi to a rare disease in February last year. Picture: Dean Martin

Time stood still for Aaron Hurle, as he listened to the doctors tell him his precious son Bodhi had a terminal disease that would take his life within a few years.

“My entire body sank, for a split second I almost passed out, and then I had to know everything about the disease and its history,” Mr Hurle said.

“But everything we learnt left us with no hope.

“There was no cure.”

Bodhi was born to Mr Hurle and his partner, Michelle Treloar, in January 2017.

It wasn’t until he started missing some of his early milestones that the new parents started to worry.

“Bodhi was always charismatic and smiley, but when it came down to crawling, he was really struggling,” Mr Hurle said.

“We were not sure what was going on, thought it could be his hips.”

Bodhi Hurle.

Then, one night close to Easter 2018, Bodhi suffered a series of small fits in quick succession.

He was raced to Mackay Base Hospital, where the family was then living, before being quickly transferred by plane to Queensland Children’s Hospital in Brisbane for more tests.

Two weeks later, the couple was told Bodhi had Tay-Sachs – a terminal disease that progressively destroys nerve cells in the brain and spinal cord.

“Time stopped still,” Mr Hurle, of Taperoo, said.

“We felt numb, confused and helpless.

“To find there was not hope was very difficult to swallow.”

Mr Hurle fell into an “online rabbit hole”, in a desperate attempt to understand the disease.

He became involved with the Rare Find Foundation, founded in 2019 by Anna Pak Poy and husband Marc Coupar following the passing of their son, Sebby, who was diagnosed with Tay-

Sachs Disease and died at only 22 months.

The foundation has this week launched an Australian-first resource for people

supporting those diagnosed with Tay-Sachs and Sandhoff diseases.

It also offers help for families affected by other rare illnesses.

Mr Hurle said he wished the resource had been around when Bodhi was diagnosed.

Bodhi succumbed to his illness in February 2019.

“Towards the end, you could see the sparkle in his eye but he was having a hard time,” Mr Hurle said.

“We hated to watch the progression of it but did not want to let him go.”

Mr Hurle wants Bodhi to be remembered for his character, his courage and his bravery.

“He was only around for a very short time but he taught me so much about myself,” Mr Hurle said.

“He made us stronger.”

For more information visit rarefindfoundation.org