Tongala's Kristy McGrath plans to cycle from Stanhope to Noosa to help her god-daughter.April 9, 2014 3:58am
Kristy McGrath will ride 1728 km to Noosa in September to raise money to help her one-year-old god-daughter Ellie Topliff who has a rare genetic disorder.
Tongala resident Kristy McGrath is preparing to take on a 1728
She plans to ride from Stanhope to Noosa in Queensland in two weeks in October.
Kristy is aiming to raise money to help her god-daughter Ellie Topliff, 14 months, who has a rare genetic disorder called Tay-Sachs Disease.
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.
Ellie was born on February 7 last year and the first inkling her parents Catherine and Joel had that something was wrong was when she stopped reaching the regular milestones a baby usually achieves and then started losing abilities she previously had.
In cases of Tay-Sachs, both parents carry a specific gene that results in a 25 per cent chance of their children developing the disease.
It causes a process of deterioration affecting the child’s mental and physical abilities and children with the disease can become deaf, blind, suffer seizures and lose the ability to swallow.
‘‘We believe Ellie’s is the only case of Tay-Sachs Disease in Australia at the moment,’’ Kristy said.
‘‘It is more common in the United States, particularly in people of certain jewish descent.
‘‘Ellie is the same age as my youngest son and I just thought I’d like to try to raise some money to help her.’’
Kristy has named her fundraiser the ‘Ride for Ellie’s Smile’ that links with a video on YouTube called ‘Ellie’s Smile’ that tells her story.
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