Schoolboy living with rare medical condition edges closer to America trip

A schoolboy living with a rare medical condition is counting down the days until he gets to meet “his team”.

Jake Roberts, eight, has been diagnosed with one of the world’s rarest conditions – Nager Syndrome.

Thank you very much for helping me to meet my team

Every year, a conference is held in New Orleans, America, where those battling with the disease come together.

This year, thanks to £2,000 raised by the people of South Tyneside, Jake and his mum Stephanie will be there.

It is a dream come true for the youngster, who attends Valley View Primary School.

He has been desperate to meet other people with the same condition who he affectionately calls “my team”.

Despite the trip still being a few weeks away, Jake already has his case out, his passport ready and is planning how he is going to spend his time away.

Stephanie, of York Avenue, Jarrow, said: “We are both really excited, but I am starting to get a bit nervous.

“It is Jake’s first time on a plane and he is really looking forward to the trip.

“I’ve been all emotional these last few days organising the last few bits as I 
know how much it means to Jake to meet people like him, and it is always something I hoped that I would one day be able to make possible for him.

“Everyone has been so kind. We have even had someone post $10 through the door for him to spend.”

Jake is one of only five children in the UK with Nager Syndrome.

He was born with holes in his heart, deafness, breathing problems, an underdeveloped limb, and a cleft palate, and at one stage was not expected to live for very long.

He has already had 19 operations in his short life – including a tracheostomy, open-heart surgery, cleft palate repair, hernia repairs, a jaw distraction, hand surgery to create a thumb and a feeding tube direct in his stomach – with more planned in the future.

Jake said: “I’m looking forward to it. I’m really, really excited. I’m going to buy lots of things with my dollars.

“Thank you very much everyone for helping me to meet my team.”

Jake, who has a younger brother Harvey, five, and sister Hannah, one, said: “I would really like to go to American to meet my team and meet people like me who have small arms and small ears.”