Boy with rare abdominal condition meets ‘kindred spirit’

Jack Lewis, left, and Grayson Robinson both suffer from the rare abdominal condition exomphalos.
Jack Lewis, left, and Grayson Robinson both suffer from the rare abdominal condition exomphalos.

A South Tyneside boy who was born with a rare abdominal condition met a ‘kindred spirit’ at a fundraiser held in his honour.

Jack Lewis, aged two-and-a-half, was born exomphalos major, which resulted in his bowel, intestines and liver being outside of his body.

Jack Lewis and his nursery friends at a fundraiser.

Jack Lewis and his nursery friends at a fundraiser.

He has since been through four operations and, after complications arose after one of them, parents Sarah and Gary Lewis, of Stirling Avenue, Jarrow, feared they were about to lose their beloved son.

Jack is now on the road to full recovery, though, and is set to meet other children with the same condition in London next month.

Ahead of that, a fundraiser was held at Hedley Hall, in Ellison Street, Hebburn, where Jack and his nursery friends were involved in a sponsored scooter ride.

Another boy suffering from the condition, Grayson Robinson, also attended after his mum, Autumn, heard about his story.

The boys really took to each other, and were like kindred spirits

Sarah Lewis

Mrs Lewis said: “After our story went out, a woman from Canada who was staying in Newcastle got in touch, and asked if she could attend the fundraiser. She came along with her son, Grayson, who has the same condition as Jack but hasn’t had the operation yet, and they wore matching T-shirts.

“As soon as the boys saw each other, they gave each other a cuddle.

“They looked at each others’ tummies and the scars, and they really took to each other. They were like kindred spirits.

“It was also really nice to be able to speak to Autumn about the things they are going through.

Two-year-old Jack Lewis was born with exomphalos major, which resulted in some of his internal organs being outside of his body when he was born.

Two-year-old Jack Lewis was born with exomphalos major, which resulted in some of his internal organs being outside of his body when he was born.

“We were able to swap ideas and advice, and I was able to explain what the operation did for Jack and his progress.”

Over £500 was raised at the event, with all of the children receiving a certificate and a medal afterwards.

Half of the money is going to the children’s surgical ward at the Royal Victoria Infirmary, Newcastle, where Jack was treated, with the rest of the funds to go towards the organisation of the event in London.

Sarah said: “The event went really, really well, and we’re still expecting some more money to come in.”

Two-year-old Jack Lewis was born with exomphalos major, which resulted in some of his internal organs being outside of his body when he was born. Mother Sarah Lewis

Two-year-old Jack Lewis was born with exomphalos major, which resulted in some of his internal organs being outside of his body when he was born. Mother Sarah Lewis