UNIQUE: Zane Stübi has a rare genetic disorder that only 200 people worldwide have, as well as cerebal palsy and being unable to walk or talk.
UNIQUE: Zane Stübi has a rare genetic disorder that only 200 people worldwide have, as well as cerebal palsy and being unable to walk or talk.

Rare condition: A CQ toddler's daily struggle

ZANE Stubi is unlike any other child.

But he does have something in common with 200 people across the globe.

The Biloela two-year-old has a rare disorder, called Tetrasomy 18p.

The chromosomal condition usually causes feeding difficulties in infancy, delayed development, intellectual disability (often mild), changes in muscle tone, distinctive facial features and other birth defects.

It results from the presence of an abnormal extra chromosome in each cell.

Zane also has cerebral palsy and cannot walk or talk.

His mother Tina Stubi is on a mission to allow Zane the opportunity to meet others like him, at the Australasian Chromosome 18 Registry & Research Society Conference at Mudjimba Beach on April 21.

"It is hundreds of kilometres from our house and we would love to take him,” Tina said.

"This is a very rare opportunity to meet the world's leading researchers in my son's rare condition. This only happens every four years.

"Especially for Zane's sake so he can meet others like himself, and know he's not alone.”

Tina said Zane's condition meant it was sometimes heartbreaking to watch him suffer through the symptoms.

"A regular day is either therapy or appointments, trying to teach his sign language,” she said.

"It is more heartbreaking to watch him suffer and be sick all the time, and we accept the way he is, but it is hard to watch him scuttle across the floor when I see his one-year-old brother running.

"We would love the opportunity to meet Zane's peers and spend time with families that we can make bonds with... but my budget won't cut it.”

So Tina is attempting to crowd-fund the trip, through popular site GoFundMe.

In the two weeks since her plea has been online, more than $200 has been raised.

But she needs $2500 and time is running out.

If you wish to donate to Zane's trip, so he can meet people just like him, visit gofundme.com/4yc7m2h8.



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