Help Shontae to keep on smiling

Amy Glass | 23rd November 2009

BATTLING ON: Andrew and Michelle Denniss with daughter Shontae who has been diagnosed with Rett Syndrome.

TWO-year-old Shontae Denniss is a happy, gorgeous little toddler.

But beneath her pigtails and sunny smile, Shontae is fighting a debilitating condition.

She has Rett Syndrome, a neurological disorder caused by a genetic change on the X-chromosome.

Mostly affecting baby girls, the syndrome causes the child to develop normally at first then enter a period of regression, losing speech, motor control and hand skills; causing profound handicap.

Shontae’s mother Michelle told The Observer that the family was “shattered” when Shontae was diagnosed with the syndrome in September this year.

“We knew something was wrong because she wasn’t crawling or walking, and she had stopped talking,” Michelle said.

“But it was 12 months of doctors and MRI scans before we were told what she had.”

Michelle and Andrew had no idea what Rett Syndrome was, and there was no family history.

“It’s heart-breaking but you take the hand you are dealt and try to deal with it. Now we know what she has, we are all about making her comfortable,” Michelle said. The Dennisses know they are facing a huge task ahead and are fundraising for the tools they need to make life more comfortable for their daughter.

This includes a special Kimba pram to assist with Shontae’s expected scoliosis of the back, a special mattress, a special booster seat, arm splints and money for the constant visits to Brisbane specialists.

The Kimba pram alone will cost $7000.

Donations can be made at Chris Trevor solicitors where a trust fund has been set up.

One in 8000 babies have Rett Sydrome and as far as the couple knows, Shontae is the only sufferer in Gladstone.

While Andrew and Michelle fear Shontae may even eventually lose her smile and speech, they are hoping for the best. They plan to start intense physiotherapy so she can learn to walk.

This week is Rett Syndrome week. For more information see www.silent-angels.org.au.