Boy born with two faces due to Sonic the Hedgehog gene defies odds

A boy born with two faces thanks to a rare condition had even more reason to celebrate as he reached his 18th birthday.

Tres Johnson, from Missouri, US, has what is known as craniofacial duplication, caused by the "Sonic the Hedgehog" (SHH) gene.

The gene is so named because it is covered in denticles – small points that resemble the spikes on a hedgehog.

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It deforms the growth of the human skull, giving sufferers a life expectancy of just ten years, and the condition so rare it affects just 36 people across the globe.

Tres was born with a cleft so large it went up his nasal passage, revealing his sinus cavity.

He used to suffer up to 400 seizures a day in addition to cognitive difficulties.

Tres' mum and full-time carer Brandy, 40, told the Sun in 2017: "His one eye looked like it was bulging out and the other sucked in, because his eyes are further apart he sees peripherally instead."

However, Tres' life has been improved drastically by medicine and his parents credit the use of cannabis oil with reducing the number of seizures to just 40 per day.

He has also had his physical appearance altered – his cleft has been closed and his skull reshaped.

Brandy recalled the moment she first saw her son after giving birth to him: "When they bought him into my room he was hooked up to a carrier box with all of his monitors, the only thing I could touch was his leg.

"Doctors weren't going to sustain Tres and planned to let him pass if my husband hadn't fought for him.

"Once I found out he was here and still alive that was all that mattered to us, we were always in it for the long haul."

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The couple made the decision to use cannabis oil to treat their son seven years ago.

"We were told there was nothing more doctors could do for him," Brandy said.

"I did a lot of research and [in] the first week using Cannabidiol his seizures went down to under 40 a day, in over two years he has had over a 90 percent reduction in seizures.

"He is cognitively improving and his size more than doubled, he was under 40lbs and now is pushing 34kg, he is constantly growing stronger and smarter.

"Using cannabis oil is the best decision I ever made."

While Tres has the mental capacity of a toddler, Brandy explained he is making leaps and bounds in all areas of life.

However the family have struggled to find medical assistance because Tres' condition is so rare.

"One [doctor] offered us a 'miracle surgery' to make him look normal, but I don't care about how he looks, what’s important is he is alive and comfortable," Brandy said.

The Sonic the Hedgehog gene was named by Robert Riddle, a postdoctoral fellow at the Tabin Lab, when his wife came home with a magazine with an advert for a Sonic the Hedgehog game inside.

The gene is a sub-type of the hedgehog (hh) gene. Other hedgehog genes include the desert hedgehog and the Indian hedgehog genes.

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