Rett syndrome mums speak out for trio of 'silent angels'
AT CURRIMUNDI Special School there is a trio of little girls known as the "silent angels".
Indianna Binnie, 8, Indeanna Mackay, 7, and Jade Hawes, 12, only have a few sentences between them, but are so happy, bright and energetic their parents call them "angelic".
"She's the most beautiful, happy child in the world," Indie Binnie's mum, Carissa Patterson, said.
"She gets this thing when she's excited, we call it her happy wobble.
"She wobbles her head and body and torso from side to side.
"She's just a happy, happy, beautiful kid."
The three girls all suffer from Rett syndrome, an extremely rare genetic disorder which displays as symptoms of severe autism and affects only girls.
Most girls with Rett have trouble walking, can't speak or have very few words, suffer seizures, intellectual disability and loss of motor control.
Carissa, of Mooloolah Valley, said Indie had her first seizure at 19 months and suffered from scoliosis, aspraxia (loss of movement control), anxiety, stomach gestational issues, impaired circulatory function and Parkinson's disease.
But her little girl can walk and run - which is a double-edged sword for her parents.
"We're like a medical team, my partner and I," Carissa said.
"She's fractured her foot, impacted her front teeth - we've had to have them removed twice - she's fallen down and smashed her face so hard just by falling over.
"She has drop seizures - she'll be walking along and all of a sudden she'll be unconscious."
All three girls developed normally until about 18 months old, when their parents began to notice something was wrong.
Jade's mum Beth Hawes said she and her husband Michael went to four different specialists who all gave them the same diagnosis: autism.
"(Jade) didn't have purposeful play, she found it fascinating to open and close water bottles, she had an aversion to bright lights," Beth said.
"But the diagnosis of autism didn't quite fit. It didn't seem right."
The last specialist they visited had only recently graduated from university and noticed something the other doctors didn't: the compulsive way Jade moved her hands.
"She holds them right at her midline and wrings them, as though she's washing her hands," Beth said.
"That's not autism," the specialist told them. "That's Rett."
Other than the compulsive hand-wringing, considered a "hallmark" sign of Rett, the uncanny resemblance to autism means it's likely many cases of Rett are misdiagnosed.
"Many girls get classified as autistic and they really don't get their needs met," Beth said.
"I truly think there needs to be more awareness about Rett so these girls get proper care.
"Being lumped in one category just doesn't cut it."
With that in mind, the Rett community around Queensland has rallied together, making October the official month of Rett awareness.
There will be events across the coast for "Rettober", including a statewide morning tea held at the Big Cow in Yandina on October 19.
The Story Bridge in Brisbane will be lit up in purple lights from October 15, the official Rett colour.
For more information or to donate visit http://www.equity works.org/donate-today? view=campaigns or RSVP to the morning tea by emailing beth@parent 2parentqld.org.au.