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Mum just wants answers on daughter’s debilitating condition

STAYING STRONG: Fiona McBain with her daugher Natasha, who suffers from the rare disorder, Rett Syndrome.
STAYING STRONG: Fiona McBain with her daugher Natasha, who suffers from the rare disorder, Rett Syndrome. Tony Martin

LIFE can be difficult for Mackay mother Fiona McBain.

Her 20-year-old daughter suffers from the rare Rett syndrome.

In fact, it is so rare it affects only one in every 10,000 to 15,000 female births.

Wheelchair-bound, unable to talk or eat, Natasha McBain has a life expectancy of 40 years.

Despite the odds, Ms McBain remains hopeful.

"I am hoping they will find a cure," she said.

"I just want answers. Doctors don't know where this disease comes from or how it works."

Ms McBain said one of the most difficult things was not being able to communicate with her daughter.

"If she could just tell us what's wrong, it would make things easier," she said.

"But she can't talk, that's the problem."

Ms McBain said she didn't suspect anything was wrong when her daughter was born.

"Everything seemed normal," she said.

"When she was six months old, she started hitting her hand against her chin.

"I became concerned when she didn't walk and her development wasn't usual."

Ms McBain said her "beautiful little girl" regularly saw a Townsville-based doctor.

"There are not enough resources in Mackay," she said.

Ms McBain said her family was her rock.

"They have been so supportive," she said. "They have been there to help out whenever they could.

"I just want to raise awareness about this syndrome in hope of finding answers."

October is International Rett Syndrome Awareness Month, to learn more or to donate visit http://www.rettsyndrome.org.

SYMPTOMS

-Rett Syndrome is a disorder affecting girls almost exclusively.

-It is characterised by normal early growth followed by a slowing of development, causing loss of purposeful use of the hands, slowed brain growth, seizures and more.

Topics:  daughter illness mum rare



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