Support for lovely Lili House auction plan

Melissa Smith with her daughter Lili, 10, who suffers from a number of conditions including complete agenesis of the corpus callosum, microcephaly, and epilepsy. Picture: GEORGIA MATTS

Melissa Smith with her daughter Lili, 10, who suffers from a number of conditions including complete agenesis of the corpus callosum, microcephaly, and epilepsy. Picture: GEORGIA MATTS

FOR Albion Park Rail's Melissa Smith, having a child with a disability led to an international search for information and a decade-long push for inclusion.

Ms Smith has three children, Isabella, 13, Lili, 10, and Jett, 8. Lili was born with an extremely rare brain disorder, complete agenesis of the corpus callosum (ACC).

Affecting only about five out every million children, the condition means that the corpus callosum, the band of white matter that connects the two hemispheres of the brain, does not form while the child is in the womb.

Lili also lives with the neurological disorder microcephaly, as well as epilepsy.

Since Lili's diagnosis at the age of eight months, Ms Smith has spent much of her time trying to give her daughter the most normal life possible.

"When she was diagnosed I couldn't find any information in Australia, but in 2005 we went to a conference in America and found a support group over there and met a lot of people who were going through a similar situation," Ms Smith said.

"Previous to that all I had heard was from doctors saying that the best we could hope for would be that she would be in a wheelchair and things like that, but to me she's just like any other kid, they're all different and I focus on her abilities and what she can do.

"I've fought hard for her inclusion so that she could go to the same school as her brother and sister and be in a mainstream class so that she can experience the things all kids experience.

"We'll go down to the supermarket and because Lili gets overwhelmed in that environment she gets upset and because she's in a wheelchair we get curious people staring, what we would like people to know is that it's better to say hello and ask a question rather than pull away your child if they're curious as this instils fear and highlights she's different. While Ms Smith has tried to keep Lili's life as normal as possible, her conditions do pose some challenges. Children's charity Variety has made one of them easier, providing assistance for the Smiths to modify their car to hold Lili's wheelchair.

"It can be really expensive to modify a car to hold a wheelchair," Ms Smith said.

"First you have to make sure you have the right car and then you have to do the modification as well, and there's no government assistance available for that."

Ms Smith is now also using her experience to help others who might find themselves in a similar situation, helping to found ausDoCC, a support group for people affected by corpus callosum disorders as well as speaking at relevant conferences, workshops and serving on a volunteer board.

The group now has 180 members across Australia and aims to unite, support and advocate for those affected by corpus callosum disorders.

In an effort to raise much-needed funds to help families like the Smiths, Variety will be auctioning a house in Bomaderry on Saturday, May 24.

The house was built in just over six months, with the local G.J Gardener Homes franchise and other tradespeople donating their time and effort.

■ For more information on the house and auction, head to variety.org.au.

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