About 450 people set off from Moama, walking across the bridge to Echuca for the second annual Tough Tilly Day.RHIANNON HORRELL January 6, 2014 9:11am
A crowd of 450 people donned singlets and crossed the Echuca-Moama bridge on Saturday for a special cause.
It was the second annual Tough Tilly Day and families and supporters made their way to the American Hotel after leaving Moama’s Border Inn, where celebrations and fundraising continued.
The day was inspired by one little girl — Tilly Wilkes — whose determined spirit is making a difference to people across Australia.
Tilly suffers from EB or Epidermolysis Bullosa.
It is a rare skin condition found in about 1300 people across the country and it means a person’s skin can blister and peel at the slightest touch.
Her father, Corey Wilkes, said the support had been phenomenal and organisers Rory Brockwell and Ricky Robertson had done an outstanding job.
Fundraising tallies were still being counted at the weekend, but the family and organisers were hoping to raise $100,000 for support group DEBRA.
‘‘One day (Tilly) will wake up and she’ll think she’s very lucky,’’ Mr Wilkes said.
‘‘She’s touched so many lives and helped people all over Australia.’’
Tilly’s mother Kelly said the support had been overwhelming.
She said the weather also proved helpful because last year participants sweltered through a 45°C day.
Supporter David McArthur described the warmth of the Wilkes family.
‘‘For (Tilly) to come along the way she is
‘‘It’s a beautiful cause to be involved with.
‘‘The family has so much love and their arms are open wide.’’
DEBRA family support program co-odinator Simone Baird also attended and spoke to the Riv about her daughter, Eliza, 14, who also suffers EB.
‘‘There’s four different types of EB and (Eliza) has the most severe form,’’ she said.
‘‘It means there’s large open areas of skin. There’s lots of pain associated with it.’’
Ms Baird said getting out of bed in the morning was the hardest part for Eliza, because it often meant dressing changes and pulling on clothes, which she said was a time-consuming and painful process.
‘‘We have a good support group but some days can be tough. Every day brings a different challenge,’’ she said.
‘‘Her skin is so fragile and it can tear. It’s really limiting to a normal life.’’
Ms Baird said part of her role was spreading the word about EB as much as possible.
UPDATE: The CFA has downgraded its advice message.
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