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.
Shepparton’s Declo Bisimwa firmly believes education is the key to a better life.
Beautiful weather greeted Tungamah residents for the 18th running of the Tungamah Lions Ten Thousand on Sunday.
When Keith and Marion Grumley and their growing family moved to Tatura on January 18, 1968, little did they know that it would be the start of a long and lasting connection to the town.
Garners Boxing Gym in Echuca is encouraging young people to get active with weekly boxing/cardio classes.
Rochester Rotary Club has celebrated its 50th birthday in style.
Sorting future of Campaspe pools
A theatre production with a difference is coming to Seymour.
Local athletes will go head-to-head with some of the best competitors from around the world in swimming and athletics in December.
District residents and visitors will be able to enjoy some of the region’s most beautiful private gardens on Sunday.
The 116th annual Cobram Show went off with a bang at the weekend, drawing in crowds from far and wide for two days of fun.
Tomorrow is a Total Fire Ban day in Deniliquin, meaning no fires can be lit in the open and all fire permits are suspended.
Fifty new full-time jobs will be created at Tatura with a multimillion-dollar expansion of the abattoirs expected to be announced today.
Remembering Australian political giant Gough Whitlam who once called on Benalla police to stop then Treasurer Frank Crean on his journey up the Hume to phone the PM.
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