Gala ball to aid disease research

A disease that could affect any child has been highlighted by an Australind woman who hopes to raise money to fund research for a cure of the genetic killer.

Pam Bianchi was confronted by duchenne muscular dystrophy in December 1993 when her son, Domenic, was diagnosed with it.

The disease is the number one genetic killer of boys in the world.

Children are diagnosed with the disease when they have little or no dystrophin, which causes the muscle cells to collapse and die and the disease to develop.

Ms Bianchi works for the not-for-profit Duchenne Foundation, whose volunteers all have a child diagnosed with the disorder.

‘‘Imagine celebrating the birth of your healthy baby boy. As time goes by, you celebrate each milestone with such joy—learning to sit, learning to crawl,’’ she said.

‘‘Imagine what it is like to learn that the very milestones you have celebrated, you will grieve for as they are aken away bit by bit by this insidious disease.’’

Domenic lost the ability to walk before he turned 11 years old.

There is no effective treatment or cure for the disease and the current average age of survival of young men is early to mid-20s.

Now 21 years old, Ms Bianchi said she was proud of the man her son had become.

‘‘Each day is a bonus,’’ she said.

‘‘He has faced his lot in life with barely a complaint — for that I am overwhelmed and awed.’’

Ms Bianchi has called on the community to support the foundation by attending the inaugural Gala Blue Ball on May 26.

To purchase a ticket visit www.duchennefoundation.org.au.