By OLIVIA SHYING
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SHARON Hevern, like any parent, wants the best for her child.
That is why Mrs Hevern has enrolled her son Luke, 15, who has Down syndrome, in a groundbreaking world-wide trial. Luke loves to sing and dance, and recently won a trophy for his "consistent and enthusiastic" participation in the Leeton Eisteddfod.
But he also has limited language skills, making it hard for him to express himself, something Mrs Hevern said was difficult.
"He was a really good candidate," she said.
"He's in year 10 and I'd do anything to help him, we've really started to notice the gap (in terms of) what he can do.
"He is withdrawing because he can't talk."
The trial Luke is participating in is to determine whether the drug BTD-001 can help improve the cognitive functions of people with Down syndrome.
The NSW strand of the trial is conducted by NeuRa and led by principal investigator Professor Rhoshel Lenroot.
"It is based on the research in the United States, it was animal research with a mouse model," Professor Lenroot said.
Professor Lenroot maintained the trial was not about changing the person, instead improving their opportunities.
"We don't see this medication as a treatment for Down syndrome, since we don't see Down syndrome as a disease," she said.
"Rather we see it as a pharmacological intervention to enhance cognitive function.
"We monitor them (the participants) several times; there are six visits altogether."
She said the mice in the previous trial had shown a 10 per cent boost in cognitive function, which they retained after stopping the medication.
Mrs Hevern said Luke was the perfect age and had been healthy enough to take part in the trial.
Luke is halfway through the blind trial.
Mrs Hevern said so far she felt Luke had developed a slight boost in confidence, particularly noticeable when he was undergoing speech therapy.
"When before he thought 'I can't do this', now he thinks he can," she said.
Luke takes the prescribed medication morning and night, something he is able to do independently.
With the trial still in its early stages, the Heverns do not know what the next stage will be.
"If the results show people are improving there may be a 500-person trial," Mrs Hevern said.
"(If that went ahead) we would be interested."
Mrs Hevern said it wasn't about changing Luke, but making his life easier as he grows and seeks greater independence.
"We're not changing his personality, if it works it will make life easier," she said.