Ashana had a rare disorder that only three people in Australia have been reported to have. Photo: Jason O'Brien
Ashana had a rare disorder that only three people in Australia have been reported to have. Photo: Jason O'Brien

Heartbreaking reason this baby may never speak

ASHANA Simpson is a "beautiful, happy and determined" baby with a heartbreaking reality.

The 11-month-old is unlikely to ever walk or say a word to her parents or two brothers.

Her mother Juanita and father Brenten Simpson were thrilled to welcome their third child into the world last year - but soon after Ashana was born, along came heartbreaking news.

"She was perfectly fine when I was pregnant," Mrs Simpson said.

Juanita Simpson with 11 month-old daughter Ashana. Photo: Jason O'Brien
Juanita Simpson with 11 month-old daughter Ashana. Photo: Jason O'Brien

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"At seven days old she had her first seizure. She had four that day.

"We had to send bloods over to America."

Not long after Ashana turned four months, she was diagnosed with a rare neuro-development disorder called STXBP1. She is missing an important chromosome that binds the protein in her brain and would allow her to walk and talk.

Mrs Simpson said she knew of only three other cases in Australia.

Ashana had a rare disorder that only three people in Australia have been reported to have. Photo: Jason O'Brien
Ashana had a rare disorder that only three people in Australia have been reported to have. Photo: Jason O'Brien

 

The 11-month-old has spent most of her life at hospital, with specialists and indoors. Photo: Jason O'Brien
The 11-month-old has spent most of her life at hospital, with specialists and indoors. Photo: Jason O'Brien

Due to the complexity and severity of the disorder, Ashana spends most of her life indoors, only leaving the house to spend hours with specialists or days in the hospital critical care ward.

Mrs Simpson said the family was spending $600 a week on therapies, forcing her husband to work seven days a week.

It was also difficult for Ashana to spend time with her older brothers, Chad, 5, and Deegan, 3.

"She has a low immune system, so she can't be out and about with crowds," Mrs Simpson said.

"I'm at home with her. We don't go to the shops or anything in case she gets sick.

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Juanita Simpson will be competing in this years Colour Run at Broadwater Parklands to raise money for the Starlight Foundation. Photo: Jason O'Brien
Juanita Simpson will be competing in this years Colour Run at Broadwater Parklands to raise money for the Starlight Foundation. Photo: Jason O'Brien

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"She has foggy airwaves and if she gets a virus she will likely need to be incubated.

"She's been hospitalised with a cold three times this year (all in the past four months). Every time she gets sick she's in hospital."

But the hardest part for the Simpsons is the reality of the disorder - that Ashana will likely never be able to walk or talk.

"It's really hard seeing people and their kids around the same age crawling and talking and mine can't even sit up,'' Mrs Simpson said.

Juanita Simpson daughter Ashana. Photo: Jason O'Brien
Juanita Simpson daughter Ashana. Photo: Jason O'Brien

This Sunday, Mrs Simpson will be competing in her first colour run - supported by four of her best friends and her sister-in-law.

"It's to give back to the Starlight Children's Foundation. The work they do is amazing."

Although Mrs Simpson knows Ashana will be unable to live the life she had hoped for her little girl, she is still yearns that one day she will be able to walk beside her.

The annual Colour Run will be held at Broadwater Parklands, Southport on Sunday.

The Starlight Children's Foundation is a non-for-profit organisation committed to helping families with sick children all over Australia. It has partnered with the Colour Run Love Tour for this year's event.

To register or donate, click here.



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