A schoolboy’s dream to meet people who have been diagnosed with the same rare medical condition as him came true – thanks to the generosity of the people of South Tyneside.
Jake Roberts, who has Nager Syndrome and a host of other medical conditions, travelled to New Orleans, last month, for the bi-annual conference for people with the condition.
It was the first time the youngster, who attends Valley View Primary School, had attended the event after the trip was made possible thanks to donations and help from the public.
It was a dream come true for the eight-year-old, who says he was “so happy” to meet others like him he affectionately labelled as “my team.”
Jake said: “I was just so happy, happy, happy, to meet my team.
“They told me that we are all special. I made lots of friends and gave lots of high fours. I was so sad to leave them.
“It was beautiful and magical and great.”
During his trip Jake spent time at butterfly world and went on different sightseeing tours, including to the zoo, with others who were also attending the conference.
His mum Steph Roberts from York Avenue, Jarrow, said: “Everyone was so lovely. When I first found out about the conference I just hoped I would be able to raise enough money so we could go – it was just really important for Jake to meet others with the same condition as him.
“The whole trip was surreal. United Airlines were fantastic, they invited Jake to meet the captain and they were just so taken by him, they wrote him a lovely letter and signed a backpack for him.
“As a parent I also learned a lot more about the condition and was able to share experience with other families.
“I also had the chance to speak to those with the condition who are a lot older than Jake to find out more about what to expect as he gets older.
“There was one little boy who was only two at the conference and it reminded me how Jake was when he was little and just how far he has come.
“We just can’t thank everyone who helped make the trip possible enough, including Community Corner and the Port of Tyne. It has helped to give us so many memories.”
Since he has arrived home, Jake, who touched the hearts of the North East Avengers who waved him off on his trip, has been treated to a VIP screening of the Ant film organised by the group.
Jake has also been in touch with some of the people he met while in America with the help of Facetime.
Jake, who is one of only five children in the UK with the condition, was born with holes in his heart, deafness, breathing problems, an underdeveloped limb, a cleft palate and at one stage was not expected to live for very long.
Jake has already undergone 19 operations in his short life – including tracheostomy, open heart surgery, cleft palate repair, hernia repairs, a jaw distraction, hand surgery to create a thumb and a feeding tube direct into his stomach – with more planned in the future.