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.
Nathalia Secondary College principal John Sciacca will speak at Cool Heads tomorrow night about the night he came across the crash that killed Year 10 student Jess Hearn.
In a surprise announcement this morning the Burramine Sports Club has said there will be no Burramine Gift in 2015.
The Tatura and district Catholic community will celebrate the 51st staging of the Feast of St Donato on Saturday, August 2.
More than $30,000 was raised for the James McQuillan Future Fund through a nearest the pin competition at Moama Recreation Reserve on Saturday.
Shavanna Coghill, Harvey Keating, Nate MacFarlane and Holly Scoble were among children who enjoyed the first community playgroup in Rochester on Monday.
Lancaster Football Netball Club makes all families welcome.
St Mary's College staff member Rhonda Tallnash declared Queensland bush poet female champion.
Jerilderie thumped Yarroweyah by 185 points on Saturday with star forward Aaron Purcell leading the charge.
Heathcote landfill is open until Sunday for the free disposal of e-waste.
Barooga Lions Club's stalwart of deb balls calls it a day after 17 years of service.
The Deniliquin Wetlands Restoration Community Project has restored the balance to the Deniliquin lagoon system.
Tackling salinity in the Goulburn-Broken basin was a key element of a presentation made to an international forum in the United States last month.
The garden is the work of more than 100 people and has taken more than a decade to complete. Aboriginal community devleopment worker Chris Thorne shared stories of Benalla's Indigenous heritage.
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