Adorable Darwin bub Robbie Russell’s devoted mum Jennifer Graetz feels blessed and relieved every day.
Her son, who just celebrated his first birthday, wasn’t expected to live past six months old.
Born 22 days premature, Robbie was diagnosed with Bardet-Biedl syndrome (BBS), an incurable genetic disorder affecting one in 140,000 Caucasian births.
Every day he continues to surprise his loving mother and doctors with his extraordinary will to live.
“He’s a miracle – when he hit the six-month mark, the doctors had no explanation except to say he’s a fighter,” Jennifer, 40, tells Woman’s Day.
Since he was born, Robbie has battled numerous health issues as a result of his condition, including obesity. At birth Robbie tipped the scales at 2.49 kilos, he now weighs a staggering 22 kilos.
“He’s definitely nudged the record books,” says single mum-of-five Jennifer, who buys size 8 clothes for Robbie.
“I thought all was fine with him until five weeks from his due date when ultrasounds indicated something was very wrong.”
Robbie also suffers from acute organ problems and is on a special diet, which includes up to three litres of fluids per day and lots of mashed veggies, to help his condition.
“The saddest part is doctors predict he’ll never crawl, let alone walk, and he may have learning problems should he survive to school age. That’s the reality I face – it’s pretty grim,” Jennifer says.
“Sure I get hit with depression and anxiety – it’s hard to describe the love I feel for him and then this terrible sinking feeling comes over me.
“But he’s taught me that when you fall over, you have to get right back up again – and that’s when magically all the bad stuff just fades away.”
Read more about Jennifer’s story in this week’s Woman’s Day on sale June 23, 2014.
