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Jaxon Emmett Buell: Baby born with most of his skull missing celebrates his first birthday

The 'miracle' baby has defied the odds after he was born with a rare birth defect

Caroline Mortimer
Sunday 27 September 2015 08:35 BST
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Jaxon was born with a rare birth defect called Microhydranencephaly
Jaxon was born with a rare birth defect called Microhydranencephaly (The Buell family/Facebook)

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A baby born with a rare birth defect which means most of his brain and skull are missing has just celebrated his first birthday - despite doctors predicting that he would not survive pregnancy.

Brittany and Brandon Buell from Tavares in Florida were told their son had a rare neural tube birth defect called Microhydranencephaly where part of brain and the skull do not form properly.

Approximately one in 4,859 babies are born with the condition in the USA but most die in the womb or shortly after birth.

Mr and Mrs Buell, who are both devout Christians, refused to abort baby Jaxon saying it wasn’t their decision to make.

Mr Buell told the Mail Online: “Who are we to decide? We were given a child, we are given a chance and we have to be his voice.”

He has since become a minor social media sensation, attracting over 100,000 likes on his page "Jaxon Strong" and has raised over $57,000 (£37,500) through his GoFundMe page to pay for his ongoing medical care.

Mr Buell described the moment they realised something was not right with the pregnancy: “After our second ultrasound at 17 weeks, when we found out he was a boy, we knew something was up when the ultrasound technician went towards his head and went very quiet.'

“Brittany got the call the next day from the doctors saying there was a concern with the MRI results. She was in tears and told me there was an issue with the baby. Of course, I lost it at work so they sent me home and the rest of the day was a blur truly.”

Mrs Buell said: ”I was devastated. It was heart breaking because something I always wanted my whole life was happening, but then I was told there was a possibility it might be a stillborn.”

We were given a child, we are given a chance and we have to be his voice.

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After several weeks in hospital as brain surgeons tried to understand his condition, Jaxon was sent home with his parents.

A year later, his parents say he is “thriving” despite knowing that he may not live much longer.
Mr Buell said: “He thrives with his mom, that one-to-one stimulation that no other therapy can give. If we can keep Brittany at home, giving him that 24/7 care is truly priceless and that's what his account allows us to do.”

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