ENJOYING life’s simple pleasure of touching water is something 22-year-old Kyah Lucas now struggles to enjoy.
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Born with the genetic disorder Cornelia de Lange Syndrome, Ms Lucas was terribly underweight at birth and has experienced delayed growth in many developmental areas since.
She’s now fed through a peg tube in her stomach and requires 24-hour care.
“Most of the signs and symptoms of the [the syndrome] are recognised at birth or shortly after,” her mother Sandra Wicks said, adding there’s no known syndrome cure.
As Ms Lucas grows, things like hydrotherapy sessions become harder and harder for everyone involved.
“Now Kyah weighs 30 kilos it’s hard for me to lift her in and out of the car,” Ms Wicks said.
“Her wheelchair weighs another 25 kilos.”
With no government funding for transport equipment and not-for-profit health services having a ‘no lift’ client policy, Ms Wicks hopes the community can help her find the $40,000 she needs for a wheelchair-accessible vehicle when the spotlight falls on the disease’s reality this weekend.
Tomorrow is International Cornelia de Lange Syndrome Awareness Day.
Ms Wicks hopes the focus on the disease can help the public see what a future run of fundraising events will help provide. She’s looking at hosting trivia and karaoke nights and golf days to support their fundraising.
“Kyah loves the sensation of warm water on her feet,” she said.
“Any support will help her to still enjoy this.”
Ms Wicks and Ms Lucas are raising money with the help of the Orange Aboriginal Medical Service.
If people would like to donate there is a fundraising account at the Orange Credit Union, with all donations over $2 tax deductible. The BSB is 802 129, account number 54342.
People looking to host events for Ms Lucas can contact Ms Wicks on 0411 846 616 or email sandrawicks72@gmail.com.
