Matt Laffan
When The Children's Hope Foundation was established, we needed some expert information and guidance to ensure that we best represented the needs of children with disabilities. Even minor technical issues such as the wording on cards, correspondence and websites was important. We debated several issues without agreement, until we sought the opinion of a most extraordinary man...
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Matt Laffan appeared on the ABC's Australian Story and Andrew Denton's show, Enough Rope. Matt suffered from a chronic genetic illness that severely malformed his body, and led to an operation which paralysed his body from the chest down. Despite this, he became a highly competent and successful lawyer, as well as a leading activist in many social issues. Above all, he was one of the most inspirational Australians in a lifetime, that anyone would have been honoured to meet. |
Part of Matt's philosophy and advice remains the cornerstone of our foundation. He said "Just remember, that is a child with a disability, not a disabled child. First and foremost, the person is a child, not disabled". Matt offered us every assistance and took the time to encourage our work.
On Sunday 1st March 2009, Matt Laffan died of respiratory illness due to complications from his condition. He was aged just 38. His funeral was attended by a sea of admirers, many of them notable figures of our country. It was a most impressive tribute and demonstration of friendship and respect.
To help carry on the legacy of his inspirational life, The Children's Hope Foundation has donated $1,000 towards the Matt Laffan Memorial Scholarship. The fund assists University students with a serious physical disability who possess a strength of character, drive and leadership potential.
For more information on Matt, click here to read about a champion bloke, who never saw it as a disability and never let it hold him back from his dreams.
Diastrophic dysplasia
Is said to affect one in a million (and Matt was certainly that). It's a debilitating, degenerative motor neurone disease which resulted in the twisting of Matt's spine and stunting of his limbs. You can find more information on diastrophic dysplasia by clicking this link.
Said Matt:
"When I was born with a rare genetic disorder I was given time to live: A very short time. They said I would not see out the week. The prognosis was wrong but the sense of urgency that was cast upon me at that crucial stage of my infancy has never left me. I am haunted by the feeling that tomorrow has no guarantees so one better make as much of today to ensure when tomorrow arrives it has something good to follow it. The hours are crowded into moments that sometimes seem too slow, and then too fast."
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At Matt's funeral, his father Dick and mother Jenny told us; "He was our hero. He never complained, and on the very rare occasion he slipped into a darker moment, he was never there for long."