By Ann Marie Angebrandt
JODIE Patterson knew something was seriously wrong with her baby girl not long after she was born.
By 12 months, little Jemma was still not talking or even crawling.
Local doctors told the Hoppers Crossing mother that her third daughter was simply developmentally delayed.
Second opinions suggested autism, or perhaps cerebral palsy.
“She looked like a normal child for the first few months, but then she just lay there,” Jodie said.
It wasn’t until Jemma, now nearly three, was taken to a neurologist at the Royal Children’s Hospital that he immediately recognised her as a “silent angel”.
It’s the name given to those born with Rett Syndrome, one of the most common causes of progressive intellectual disabilities in girls.
“He looked at her quite funny and said he thought she was an angel,” Jodie said.
Girls with Retts often have unusually bright eyes, beautiful smiles, and seem to understand more than they can express.
“You can read her face and know exactly what she wants,” Jodie said.
“Now I think of her as our little angel.”
Only a few of the 10,000 girls in Australia who have been diagnosed with the disorder will live beyond childhood.
Motor skills and speech progressively deteriorate, and even those who learn to walk lose the ability at some point.
“It took me several weeks to get my head around it. I was scared and confused and probably angry,” Jodie said.
Since Jemma needs full-time care to help her eat, dress and get around, Jodie has had to quit her job.
Ironically, she worked in the disability field for more than a decade, running camps for children with spinal conditions for Wheelchair Victoria.
“It’s not until your own child is diagnosed with a disability that it really hits you,” Jodie said.
She has now made it her goal to educate as many people as possible about the condition and fundraise for research with the hope of finding an eventual cure.
Researchers have recently made major breakthroughs in studying the syndrome and are now searching for a way to slow or even halt its progression.
“I’m hopeful maybe something will be discovered in time to help Jemma and other girls like her,” Jodie said.
Jodie and her family – husband Darren, and daughters Chloe, 7, and Chelsea, 5 – will sell angel ornaments, keyrings, pins and wrist bands to support Angel Week at the end of November.
All profits are spent directly on Rett Syndrome research.
Items can be purchased online at www.rett.nesher.com.au.
