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Down Syndrome NSW
Level 6/410 Church St, North Parramatta
9am-5pm Monday - Thursday
T: 9841 444

Saturday, 7 June 2008

Life enriched by care

Sydney Morning Herald, Saturday 7th June 2008

Her daughter's disability has helped the Liberal senator Sue Boyce become a better mother, she tells Tim Dick.

To get to her literacy course Joanna Boyce needed to take the ferry. Her mother, Sue Boyce, showed her how to use it on her way to work. She showed her the next day, too, and the next, and every morning for the next week or so.

The training wheels stayed on not because Joanna needed them but because her mother enjoyed the morning ride, and when the Liberal senator for Queensland is back from Canberra - and Joanna is not doing the shredding in the Opposition whip's office - they still ride the Brisbane CityCat.

Joanna, 24, is the youngest of the three Boyce children and the only one still at home. She has Down syndrome.

Read the full text of Tim Dick's article here.

Publication of experiences such as Senator Boyce's are a nice counterpoint to articles earlier this week in the US financial press highlighting the 22% rise is Sequenom shares that followed the release of early results of a clinical trial for the company's non-invasive diagnostic prenatal test for Down syndrome.

Sequenom plans to begin commercial release of the test in 2009. Given the very high rates of termination (80 - 90%) reported when a definitive prenatal diagnosis is available, it would be expected that the live birth incidence of babies with Down syndrome is likely to fall markedly once such tests are offered to all pregnant women.

Since many parents report receiving little or no balanced information about raising a child with Down syndrome along with a prenatal diagnosis, organisations worldwide such as Down Syndrome NSW are making it a renewed priority to help fill that gap, believing that parents need more information to make informed decisions.

Patricia Bauer has included press reports about the Sequenom trial and results in her listings for 4th and 5th June.

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