Support research into rare disease
SARAH Ward was just two years old when her life changed forever.
Sarah, from Hammond Park, was 13 months old when she started walking, but her mother Leah Ward said they began investigating when her technique and balance hadn’t improved by the time she was 18 months old.
It was during a subsequent visit to a neurologist that Sarah was diagnosed with ataxia telangiectasia also known as A-T.
The disease is a rare degenerative neurological condition with similarities to cerebral palsy, cystic fibrosis, muscular dystrophy and motor neurone disease that also carries an associated immune deficiency, giving those with A-T a predisposition to leukaemia, lymphoma and other cancers.
“Naturally the news was devastating,” Ms Ward said.
“Sarah is now 15 years old, she manages to get around the house with a walker, but uses a wheelchair for school and other activities and she needs full assistance with eating, showering and all activities of daily living. She is a typical teenager in a body that that does not respond to her commands.”
Ms Ward said about 45 children in Australia have been diagnosed with A-T, most of whom are not expected to survive their 20s.
“It is heartbreaking, we are constantly mourning the loss of children we know as they succumb to the devastating effects of this condition,” she said.
“Not only are we grieving the loss of these children, there is also the knowledge and anticipation that one day it will be our turn.”
The Ward family is part of BrAshA-T, a notfor-profit aiming to increase awareness of A-T, offer support for families living with the condition and raise funds for research into a cure.
BrAshA-T is auctioning off a fully-catered corporate box to the Fremantle Dockers game against Port Adelaide at Optus Stadium on June 15. To bid, visit https://brashat.org.au before 5pm on June 5.
Leah Ward with her daughter Sarah.