Families’ heartache as tragic disease robs kids of memories, skills before untimely death (Courier Mail)

21 Apr 2021

Picture: Peter Wallis for Courier Mail

It’s against nature for a parent to bury their child - even worse when that child is lost to a devastating degenerative disease for which there is no cure and no treatment. 

For Brisbane couple, Julie and Craig Bevan, the pain of the loss of their precious 15 year old son, Noah, is as raw as the day of his passing almost two years ago. As one of seven children, Noah was the only child of the Bevans to inherit a defective gene from each of his parents which resulted in Sanfilippo Syndrome.

On the day which would have been Noah’s 17th birthday, Saturday 24 April 2021, the Bevan family is hosting the inaugural NOAH’S K9 FUN RUN to celebrate Noah and his love of his dogs, and to raise much-needed research funds for the Sanfilippo Children’s Foundation.

On Saturday 24th April 2021 from 10am, bring your dog to the waterfront of Sandgate to walk or run 2.5 or 5kms and help raise vital research funds for this devastatingly cruel disease.

Click here to read the article published in the Courier mail.

You can register to join the Bevans here: https://www.sanfilippo.org.au/noahsfunrun

Noah Lachlan Bevan RIP... gone too soon!