The life expectancy of a child with Tay-Sachs disease is anywhere between two and five years of age.

Kristy McGrath, a resident of Stanhope Victoria and Ellie’s godmother, is preparing with her support team to take on a 1728 km fundraising bike ride from Stanhope to Noosa over 15 days, commencing on Saturday October 11. 

They will pass through Forbes on Tuesday October 14. 

Ellie was born on February 7th 2013 and the first inkling her parents Catherine and Joel suspected that something was wrong was when she first stopped reaching the regular milestones and then started losing abilities she previously had.

Infants with Tay-Sachs often develop as normal during the first few months of their lives before a fatty substance known as Ganglioside GM2 builds up in their nerve cells and tissues in their brain.  

Tay-Sachs is a very rare, inherited disease caused by an abnormal gene. 

In its advanced stages, the disease causes a gradual loss of vision, deafness, seizures, respiratory problems, gradual paralysis and dementia. 

The fundraising group has been working tirelessly to secure sponsorship – they are still looking for a major sponsor to come on board to support Kristy.  

All funds raised will go to the Brain Foundation to assist Ellie and her family with medical expenses and specialist equipment.

If you would like to donate or sponsor the ride, you can go to: www.brainfoundation.org.au then follow the links to Ellie’s Smile then Donate.

All donations to the cause over $2 are tax deductible.