Wonderful Harry's first birthday

BABY Harry Matthews celebrates his first birthday today with cards and presents galore at his party - a day his loving parents thought he would never see.

BABY Harry Matthews celebrates his first birthday today with cards and presents galore at his party - a day his loving parents thought he would never see.

For the first year of the little Felixstowe boy's life has been a nightmare which has seen him endure a series of major operations, and left him having to be fed through a pipe into an artery.

His mum and dad Catherine and Adrian Matthews were prepared for problems when he was born because the 20-week scan showed he had an enlarged bladder.

But they could not imagine the trauma which would follow as other problems were found by the specialists.

Mrs Matthews, 26 said: “The enlarged bladder meant he could not go to toilet properly because the bladder was too big and floppy to create enough pressure - it would not have been full until he had a litre of milk inside him.

Doctors had to make a hole in his stomach to ease the problem initially, but soon afterwards it was discovered Harry's stomach was distended. His bladder popped out of him twice.

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An emergency operation was needed and this discovered that his stomach had rotated and his colon also needed to be removed.

Mrs Matthews said: “He also had ten episodes of septicaemia during this time, and at one stage we were told the only way to save him might be a stomach transplant, though these are experimental at the moment.”

He spent the first four months of his life in the Norfolk and Norwich Hospital and the next five at Great Ormond Street, with Mr Matthews, 32, a postman, and Mrs Matthews, a nurse, living there.

Doctors said he had a condition called hollow visceral myopathy and the only way he would be able to feed would be via a tube inserted straight into an artery to bypass his stomach - with the food to be pumped in 12 hours each night. He would also need to wear a catheter during that time.

The family - who live in Orwell Road, Felixstowe - were told this would be the situation for the rest of his life.

Mrs Matthews said: “They told us he would live two years maximum and that it was a very rare condition - there have only been 25 cases in the last 15 years.

“In the past few weeks though he has been drinking milk and absorbing a little of it which has astonished the doctors. He still has to be on the pump 12 hours a day, but absorbing some milk will help to stop his liver eroding.

“They won't say how long he might live because they don't want to build our hopes up. It is a miracle he has got to his first birthday.

“But he is a real fighter, a brilliant, lovely little lad with a great temperament. We love him to bits and would not change him for the world, even with all his problems.

“We have been through absolute hell for many months but it has made us realise what things are important in life - it's not the materialistic things, people are important, family and health.”

Have you been affected by a rare disease - let us tell your story. Contact the Evening Star newsdesk on 01473 324788.

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ADRIAN and Catherine Matthews desperately wanted to thank all the people who have helped them in the past year since Harry was born.

One of the biggest helps was the Sick Children's Trust, which put the family up in London for five months free of charge while their baby was being treated.

To thank the trust, Adrian and five friends are staging a 24-hour snooker marathon on November 26 at Felixstowe Snooker Club.

The players will hold matches against each other, three taking place simultaneously, starting at midday and continuing to do so until the Sunday lunchtime, sponsored by friends, family and work colleagues.

Mr Matthew said: “We just wanted to give something back - to say thank you.

“It meant so much that we could be together with Harry at the hospital and the trust made that possible by providing us with a real home from home in London near the hospital.”

Mrs Matthews added: “There was no way we could have afforded to have stayed up there without the trust and we didn't want to be separated from Harry.”

The trust has to raise £1 million a year to carry out its work in providing accommodation for families.

The couple also thanked Mr Matthews's employer the Royal Mail for its help - the company gave him five months off with pay so he could be at his son's bedside.

Anyone who would like to sponsor the snooker players can do so The Evening Star office, 172 Hamilton Road, Felixstowe.

WEBLINK: www.sickchildrenstrust.org

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