Sup­port re­search into rare dis­ease

Cockburn Gazette - - NEWS -

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.

Pic­ture: Jon Hew­son

Leah Ward with her daugh­ter Sarah.

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