Brave baby battles rare life threatening disease

Cindy Donnelly and Jayne Brogden are raising money to help their relative, nine-month-old Bonnie McNamara, who was recently diagnosed with the rare condition, Campomelic dysplasia, that affects her airways and breathing. Photo Nev Madsen / The Chronicle
Cindy Donnelly and Jayne Brogden are raising money to help their relative, nine-month-old Bonnie McNamara, who was recently diagnosed with the rare condition, Campomelic dysplasia, that affects her airways and breathing. Photo Nev Madsen / The Chronicle Nev Madsen

NINE-MONTH-old Bonnie McNamara is known for her smiles. Her cheeky grin has been known to stop strangers in their tracks.

But when you learn that Bonnie was diagnosed with a rare medical condition that means she could stop breathing at any time, those smiles seem even more special.

Bonnie suffers from a rare condition called campomelic dysplasia which causes a raft of medical conditions. Of most concern is her respiration and airways.

There is nothing in Australia where you can go to get more information.  We can't tell what the future will hold for Bonnie.

She was only diagnosed officially with the condition this week after specialists sent a sample of her DNA to doctors in France.

"The condition is usually fatal at birth," her grandmother Jayne Brodgen said.

"But she has a rare form that means she is still with us.

"There is only one other person in Australia with this condition."

Because the condition is so rare, it is difficult for Bonnie's mum and dad, Kathy and Boyd McNamara, and her five siblings to handle her care.

"I try to stay positive but it is the 'not knowing' that is the thing that you hate," Ms Brodgen said.

"There is nothing in Australia where you can go to get more information.

"We can't tell what the future will hold for Bonnie.

"She might need a wheelchair or walking frame or specialised treatment."

The Allora-based family has moved to the warmer climes of Tweed Heads to aid Bonnie's respiration.

To help ease the financial burden, a fundraiser will be held on Sunday, August 25.

The fundraiser was the idea of Bonnie's great aunt Cindy Donnelly who has already raised more than $8000 for specialised equipment.

A Mile of Smiles fundraiser will be held in Queens Park.

Ms Brodgen hopes the fundraiser will see a mile-long stretch of people smiling for Bonnie.

For more information contact Ms Brodgen on 0413400718.



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