>1 in 4,859 babies in the U.S. are born with the condition each year but most die soon after birth
>A GoFundMe page set up a year ago has raised over $54,000 with 1,181 donors offering their support
>Pictures of Jax 'Strong', a nickname he has earned, have flooded social media with over 18,000 shares and 80,554 likes on Facebook
Born with most of his brain and skull missing, baby Jaxon Emmett Buell was not expected to live. In fact his parents had been told to abort him when doctors discovered his condition.
But he has defied all odds - and now he has just celebrated his first birthday.
Baby Jaxon's devout Christian parents, Brandon and Brittany Buell, were told by doctors that he had an extreme brain malformation, which meant he would probably not survive the pregnancy.
But Jax Strong – a nickname he has earned on social media - is now one years old. His inspirational story has captivated families across the U.S., with nearly 90,000 people 'liking' his page on Facebook and 18,000 people sharing his story.
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Baby Jaxon Buell was born with part of his brain and skull missing. He beat the odds and turned one in August
Jaxon was diagnosed as having Anencephaly, a neural tube birth defect in which a child is born without parts of the brain and skull, but doctors were still unsure of how severe his condition would be.
‘We did everything
we could to give him a fighting chance and all he's done since being born is fight right back.’
About 1 in 4,859 babies in the United States will be born with Anencephaly and usually die shortly after birth, according to the Center for Disease Control and Prevention.
30-year-old Brandon, said: '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.'
For the next few weeks, the anxious couple were transferred between doctors and given five possible conditions of what it could be. Spina bifida, Dandy-walker syndrome and Joubert syndrome were all possibilities.
Brandon Buell (left) and wife Brittany Buell (right) stood by their Christian faith during the difficult pregnancy
Doctors gave them the option to terminate the pregnancy at 23 weeks but the young couple, who are against abortion, believed it was not their decision to make.
Brandon, who is an assistant to the CEO of a small community bank in Florida, said: 'We went home that night thinking if you are telling us to abort, we would never know what Jaxon could have been, if he could have survived.'
'Who are we to decide? We were given a child, we are given a chance and we have to be his voice.'
'We did everything we could to give him a fighting chance and all he's done since being born is fight right back.'
Jaxon's 27-year-old mother, 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.
'It took all the joy away from me. The happiness that normal women have when they are pregnant - I had none of that.'
The miracle baby survived the pregnancy and was born by caesarian section on August 27, 2014 weighing four pounds.
He spent his first three weeks connected to multiple tubes in a neonatal intensive-care unit in Winnie Palmer Hospital, Florida, as brain surgeons tried to understand his condition.
Baby Jaxon visits Boston in August with his parents, Brandon and Brittany
Brandon said: 'It was very emotional. I remember holding him on day two and listening to the doctors say my son would probably never walk, never talk, never know when he's hungry, or never hear or see. They really did not expect him to make it.'
Following multiple hospital visits and a two-month scare of multiple seizures, inconsolable screaming, and feeding tube issues, Jaxon was taken to the emergency room at Boston Children's Hospital, a top U.S. hospital for pediatric neurology, in August..
KNOWING THE RARE DISEASE
Microhydranencephaly is a severe abnormality of brain development
1 in 4,859 babies in the U.S. are born with the condition each year, but most die soon after birth
The rare disease can be possibly inherited by a recessive gene
Signs of microhydranencephaly include severe microcephaly, ridges on the scalp, and developmental delays
They went in with the unknown and came out with a burst of hope: a true diagnosis – Microhydranencephaly - and new medicine that has since eased Jaxon's condition and made him a lot happier.
Yet Brittany and Brandon still wake up everyday knowing the reality they face - that Jaxon may not be here tomorrow.
Brittany said: 'It is always in the back of my mind. I'm very aware that today maybe his last day. I'm aware tomorrow he may not be here.'
'I try to stay positive 99 per cent of the time but there is that 1 per cent because I know the reality of the situation - that we're probably going to outlive him.'
Brandon's work colleagues set up a GoFundMe page when Jaxon was born to help out the family with the pricey medication and extra expenses.
Nearly $55,000 has been raised by 1,181 donors since then and the outpouring of support is growing day by day.
The inspirational family attend a friend’s wedding in July in Jupiter, Florida
Brandon and Brittany Buell are devout Christians and refused to terminate the pregnancy. Baby Jaxon was born in August 2014
The couple, who are living on only one salary, described the support as 'incredible' and said they 'never dreamed that this would happen.'
Jaxon's father 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.'
Brittany said: 'It's all been so overwhelming in a positive way because we can't go anywhere without someone stopping us, and saying, 'hey, what's your story?' or they would have seen his picture and say, 'hey, look it's Jax Strong!' – his nickname! It's truly incredible the amount of people he has had an impact on.'
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