Robbie has had 4 major and invasive surgeries in the last year – he is only 19 months old.
When Jen was pregnant with her second baby, her nineteen week scan found that her baby had a cleft and lip palate. 

Doctors were concerned about the health of her baby so they sent Jen to the hospital in Brisbane for more tests.
And that’s when Jen was told that her baby had extensive facial defects and that she should consider an amniocenteses to find out more about her baby’s condition. 

'But I refused. It came with a 1 in 200 chance of miscarriage and I was already facing a 1 in 700 chance of a child with a cleft palate’. I decided that I would take whatever was to come' Jen says.

When Robbie was born, he wasn’t breathing properly and had to be put in the intensive care unit.

Doctors told Jen that Robbie had hypopituitarism which meant that his pituitary gland didn’t produce growth hormones, adrenaline and lacked testosterone.

But that wasn’t all. Robbie was then also diagnosed with Ring 18, a condition so rare that doctors cannot tell Jen how his condition will develop and what challenges he will face in the future.

Robbie will be on medication for the rest of his life. Even the smallest cold or injury sees his medication tripled and a broken bone could be life threatening if he doesn’t receive his emergency injection in time.

Robbie’s condition has many side effects, including delayed speech, missed milestones, mild hearing loss due to a narrowing of his ear canal and a lack of reflexes meaning that when Robbie falls over he doesn’t put out his hands to break a fall. He often has lots of bruises!

‘I wouldn’t change Robbie for the world; he is such a happy baby and draws people to him. He is always loved by people around him and I gain most of my strength from our brave little man’, says Jen.

‘But not knowing what is ahead for him is so hard. All I know is that it will be challenging and you always want your children to be healthy and well. We have to find those links that help us understand how to treat and cure these diseases. I don’t want other children to face the same challenges’.

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