By DANI ROTHWELL
BERWICK’s Fiona Dowdell will walk over 1100 kilometres for her grandson.
Her grandson Tristan was recently diagnosed with Friedreich’s ataxia, and may be the youngest person to be diagnosed at four years old.
Now five, Tristan’s life expectancy has been cut short.
It is a fatal genetic disease that affects thousands of people world-wide. Tristan is expected to experience complete incapacitation through loss of vision, hearing, scoliosis and eventual cardiac failure.
Tristan’s mother Natalie said despite how exhausting and uncomfortable things could get for him, he never complained.
“He is social, intelligent and a delightful boy,” she said.
“After his own realisation that he won’t be able to play football, he has decided that he wants to coach, and to join a chess club.
“Instead of putting on the latest sneakers, he lets me put on leg braces.”
Both Natalie and Fiona agree that their lives have changed since the diagnosis.
“Every afternoon (seven times a week) he has speech therapy and occupational therapy,” Natalie said.
Tristan also has a list of over 15 specialists he visits.
“He’s honestly such a kind little boy,” Fiona said.
“He’ll lose his vision, hearing and speech, but still be mentally aware.
“That’ll be so hard for him.
“His life already has so many specialist and hospital visits.”
Fiona’s walk will begin at the Sydney Opera House and end at Melbourne’s Federation Square.
Her goal is to raise money for research into Friedreich’s ataxia and awareness along the way.
Beginning on 16 March, her solo walk needs community support, and Fiona is calling for help with:
*A support vehicle: ideally a campervan with cooking/sleeping facilities x4
* Fuel for the support vehicle
* Sponsor advertising for the support vehicle eg. flags, magnetic signage
* T-shirts, wrist bands, memorabilia.
* Overnight accommodation for three
* Publicity/promotion opportunities for the walk and sponsors
* Food and water supplies/vouchers
Fiona is also calling for sponsors who would be publicised during any other media coverage received.
Visit https://give.everydayhero.com/au/f-a-to-go to donate to support Tristan and future research into Friedreich’s ataxia.
