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A girl looks towards the camera while sitting on her father's lap.

Two daughters and their male and female parents smile, sitting on a couch.

A young girl wearing sunglasses throws a basketball.

A woman wearing glasses and a white medical coat smiles in an office.

"I know of a lot of people who had genetic testing many years ago and they didn't find it because we didn't know about it,"
Dr Fahrner said.

A newborn baby on a hospital bed next to an ultrasound machine.

"After we went to the paediatrician, we went to the kidney specialist,"
Ms Clifford said.

A small baby holds hands with two adults, walking on grass.

"I think when some of the other kids her age were standing up by themselves, Ashley was still trying to crawl."

A two-year-old girl in a bright yellow dress with a birthday cake behind her.

"Reading that paper was honestly like we were reading about Ashley, it was her all over."
Two young girls smile in front of a building that says Ronald McDonald House Charities.

"The challenges we face daily, they were still facing daily as well, so it gave us a glimpse into what our life would be like."

A girl sits next to two women who are showing her cards with cartoon human faces on them.

"When she was two, the goal was meeting her developmental milestones and trying to catch her up to her peers,"
Ms Datson said.

A young girl about to throw a basketball into a hoop in her backyard.

"If there was a way to avoid that, we would have absolutely jumped at the chance."

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