"There were no warning signs, it just happened in her sleep,"Ms Snelgar said.
"It's really only now that I can reflect more on just how vulnerable and high-risk their existence is."
"It was no easy feat doing that because in Australia there are no ethics protocols in place to allow that for a minor,"Ms Snelgar said.
"One donation can lead to dozens, sometimes hundreds, of studies,"the spokesperson said.
"We just knew that it would be for the greater good; we didn't want her death to be in vain,"she said.
"I had never heard of Angelman Syndrome,"Ms Snelgar said.
"I've always thought it's a bit uncanny that her birthday was so closely related to Angelman Syndrome."
"I just feel connected to Blair when I'm doing this; I'm doing something meaningful and with purpose,"she said.
"With the NDIS data, we're able to see that there's around 70 per cent not diagnosed [with Angelman Syndrome] in this country."
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