Taylor’s treasured family time

Kim Waters
BIRTHDAY parties are always a treasured memory for parents.
But for the Wood family, daughter Taylor’s sixth milestone next week means “so much more” than the celebration of another year.
Taylor was diagnosed with Lissencephaly, a rare brain formation disorder, when she was six months old.
Mother Michele Wood said a neurologist told the family that Taylor had a life expectancy of 10 years, would never walk or talk and would require 24-hour care.
Ms Wood described Taylor as “the joy of our lives” but said it was a “constant struggle” to look after her.
“We really treasure each moment with her and she’s such a happy little girl,” she said.
“But it’s a constant struggle for us and we can’t go on holidays or anything, we didn’t even have any respite for the first three years but now I get about three hours a week to myself.
“We don’t go out much and we haven’t been out for dinner in years so it’s taken a toll on my partner and I.
“Last night she was struggling to breathe because she’d got her face into the sheets and if I hadn’t heard that….well you just always sleep with one ear open.”
Ms Wood said costs associated with respite, physio, and Taylor’s special equipment was “constantly stacking up”.
“Respite is really expensive and Taylor’s carers need special training,” she said.
The family also miss out on special school funding because they have to home-school Taylor.
Ms Wood said it was “difficult” to find out what funding the family was entitled too.
“There are a lot of mums out there in the same position and it’s so difficult trying to find out what you’re entitled too and then applying for it while taking care of your child.”
“Any funding or help or information from anyone would be so appreciated.”