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Bennelong Community Raising Funds & Awareness on Glycosylation

Mr ALEXANDER (Bennelong) (13:58): Today I would like to talk about a local resident who is living with a severe disability, and the wonderful community that has sprung up to help her and her family. West Ryde residents Ray and Samira Chebat have a 12-year-old daughter, Samantha, with a rare condition called glycosylation type 2N. Only 10 people in the world have this disease, which is both incurable and terminal. She cannot eat, talk, walk or hold herself up. Keeping Samantha mobile is essential for treatment, and keeping her active is important for her mental health. However, as she grows it is harder for her family to move her and her wheelchair. She now needs a wheelchair accessible car.

On hearing of her family’s needs, an enterprising group of local residents have set out to raise funds to make the necessary adjustments to her car. They have been led by David Tompkins, of West Ryde Toyota—a great man, and chair of the West Ryde Chamber of Commerce. He has also brought on board Ryde Business Forum and local stalwarts Nora Etmekdjian and Andrew Hill, with Rosanna Gallo and Macquarie Park Rotary Club assisting with fund-raising logistics. So far the campaign has raised over $13,000.

I would like to congratulate the community for the speed and spirit with which they have rallied around this family. And of course I am sure the whole House will join with me in passing on our best to the brave Chebat family.