Life Video

By Jess Grieveson-Smith

The Uk’s first baby born with an ultra rare genetic disorder has become a model thanks to his doting parents.

Little Eddison Bodell, who is six months suffers from a genetic condition known only as, ‘1p21.1p13.2 x 4 duplication’ – something that has left doctors baffled after his diagnosis in February.

PIC FROM Jacob Mathews/Memory Box Pictures/Caters

But despite being the only person in the UK with his rare condition – which caused his body to create additional genes –  Eddison, from Swadlincote, Derbs, has already landed a modelling contract.

Mum, Lauren Dickinson, 23, a doctors assistant, said: “After dozens of hospital appointments and meetings with specialists, we finally know what Eddison is suffering from.

“There was no indication that there was anything wrong, throughout the entire pregnancy or the birth – his only problem seemed to be the acid reflux and he was a little small.

““Medical specialists have told us that his condition causes his body to create extra genes.

“UK doctors have had to seek advise from specialists from all over as he’s so rare, we’re yet to meet anyone else in the world with his exact genetic condition but we know he’s the only one in the UK.

PIC FROM Caters News

“His condition has so far caused him to develop slower than he should have and he has to eat with a feeding tube.

“Eddison also can’t hold his own head up but as it’s so rare we’re really still unsure how his condition will affect him long term.

“We’ve been told he’s the only person in the UK with his diagnosis and it took three and a half months before we knew what he actually has.

“But despite all the stress and Eddison being so poorly, he’s landed himself a contract with a designer baby clothing brand.

“Despite all the constant worry as we don’t know what the future holds, he makes us so proud.

“I love seeing his little face on designers Jacob Matthews website.”

PIC FROM Caters News

Eddison who lives at home with his mum and brother, Kenley, 4, is currently fed through a tube. 

It is not known how the condition will continue to affect him, with his future uncertain.

Yet none of this has stopped the adorable baby from attracting the attention of fashion brands and modelling agencies.

Lauren said: “He didn’t gain weight like he should have from a baby, he had acid reflux as well as the soft spot on his head being too low.

“He had loads of scans, they checked his heart, but eventually they noticed he had dysmorphic features which included low set ears, triangular face, and a small jaw.

“It seemed like we were waiting for ever waiting on results – initially I didn’t think anything of it, but the more I researched what could be wrong, the more I worried.

“We’ve got loads of family and friends helping, but we feel alone – I worry that he’s going to be bullied when he’s older too.

PIC FROM Caters News

“He’s only six months old at the moment but he’s already much smaller then he should be.

“We won’t know how 1p21.1p13.2 x 4 duplication will affect him in terms of mental development until he’s older.”

Eddison is now an official Jacob Matthews ambassador and wears their clothing.

Lauren added: “I scroll past the adverts when I’m on a social media feed and my son, Kenley, gets excited when he sees his brother pop up.

“It gives us a lot of pride, it’s amazing he’s achieved all of this with everything going on.

“Edddison is set to have an operation on his eyes as although his vision is fine, his eyes don’t align.

“But we just take each hospital appointment and each day as it comes – all we want for Eddison is the most normal life possible.”