Andrew Mathieson
ALIVIA Bell is one of the silent angels.
Close family and even little kinder classmates can see it in her eyes.
Since a rare genetic disorder left her unable to walk or talk, they say she looks deep in their souls to their thoughts.
For mum Fiona, words and actions are not needed to convey their close bond.
“Little girls with Rett syndrome, it’s in their eyes – they’re called silent angels,” Ms Bell said.
“They usually have beautiful clear faces and big, clear eyes. It’s almost like she turns and looks inside into your brain.
“It’s like she just knows.”
The six-year-old is far from suffering in silence. She is surrounded by too much love at her Geelong West Kindergarten to be unhappy.
“She has a beautiful smile and she just loves cuddles,” Ms Bell said.
“Most of the kinder kids will wait in line and have a cuddle with Livvy most days.”
Ms Bell said students as young as three had learned to make eye contact to communicate with Alivia, who was unable even to move her hands.
With decreased bone density preventing her from finding balance, a special chair was developed so she could move around her classroom.
Ms Bell’s high praise earned the kindergarten a Gateways Support Services award for outstanding achievements in positive inclusion of children with disabilities and additional needs.
She described the staff as “a step ahead” in recognising Alivia’s needs.
“It’s just been the greatest gift to our family,” Ms Bell said.
“We’ve just had this weight come off our shoulders because it’s really stressful when you have a child with severe disabilities and possible medical issues that can be life-threatening.”
Ms Bell remembered how her “perfect baby” was born with a big smile.
Then she noticed on Alivia’s first birthday that she wasn’t playing with her toys. Two years of confounded specialists followed before a series of blood tests revealed Alivia’s condition.
“There is no cure and no treatment,” Ms Bell said.
Doctors had told the family to brace for a short life and difficulties in Alivia’s teens.
Sufferers usually lived until at least 20 and “sometimes up to 30 to 40,” Ms Bell said.