FIVE-year-old Charlie Fitzsimmons-Wilson has ‘never eaten a meal in his life’, after being born with an extremely rare condition.
The youngster, from Darwen, has a chronic intestinal pseudo-obstruction, a syndrome that prevents his body from properly digesting food.
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And Charlie, who is fed by tubes directly into his body and has a colostomy bag, is one of only around 120 children in the country who suffer from the condition and 1,000 worldwide.
The Avondale Primary School pupil, who lives with mum and dad Lindsey and Kilian in Vale Street, has been in hospital for more than half his life and has had 26 operations.
He is currently at Manchester Children’s Hospital, where he has been for the past month.
Mr Fitzsimmons-Wilson said it was difficult bringing up a child with such a rare and serious condition.
He said: “His organs do not behave the same as ours do. Some days it works okay and others it does not.
“It affects his stomach as it doesn’t empty properly and swells up.
“We have been in hospital for just over a month now, but we had just had a good 12 months at home.”
Lancashire Telegraph medical expert Dr Tom Smith said pseudo-obstruction was a very serious condition.
He said: “The trouble is the nerves controlling the way the gut muscles push food down do not work very well.
“Our digestion is controlled by the autonomic nerve system, which tells your body to push your food through your system without you having to think about it, but with pseudo-obstruction the nerves system doesn’t work properly.
“Because of this the food stops moving, which causes the child to feel ill and vomit.
“It also causes the stomach to bloat.
“Pseudo-obstruction is very difficult to treat and there is no medicine to take because it all starts while the child is in the womb just weeks after conception.”
Mr Fitzsimmons-Wilson, a software consultant, said they had no idea what the prognosis was for their son.
He said: “Some children have died and some people live with it.
“It isn’t like cancer where you have an end date, he could live his whole life.
“He has an intravenous drip that is connected to his heart and that can be dangerous as if he gets a bug it can go straight to his heart.”
Mr Fitzsimmons-Wilson said he and Lindsey, who previously worked as an accounts assistant but now spends most of her time looking after Charlie, tried to give their son as normal a life as possible.
He said: “He goes to school at Avondale but every day he misses time to check his tube and empty his colostomy bag.
“When we make a meal we always make him some and he may have a nibble of something, but he has developed an aversion to food because he understands it can make him ill.
“He recently developed a liking for cheese and tomato pizza, so if we go out we will order him one and he will have one or two bites of a slice, but any more than that and his body can’t cope with it.
“For a while he was just eating a slice of brown bread, but he’s never eaten a full meal in his life.
“He understands the significance of treats, like if he goes to a birthday party he still gets excited about cake and sausage rolls. “He just knows he can’t have any.
“And if he comes in and it has been a cold day he will say, ‘let’s have some hot chocolate’, even though he knows he can’t have any, because he understands that is what people drink when it is cold.
“He never lets it bother him, he is such a character and everyone loves him. He has done really well at school even though he has missed so much.”
Charlie has had numerous operations to ensure his feed tubes are effective, as well as procedures to treat stomach ulcers and examination of his bowels.
Mr Fitzsimmons-Wilson, who plays for Blackburn Rugby Club, said he was hopeful Charlie can gradually increase the amount he eats, but added it was unlikely he will ever eat normally.
He said: “We have had training in how to look after him and deal with things like his tubes coming out.
“So if he goes to a party or round to a friend’s house, we have to be there to watch.
“We rarely go out as a couple any more. We have to be there for our son.”
Mr Fitzsimmons-Wilson and his wife have been supporting PORT, a charity set up to research the condition and support families living with it.
He has given up alcohol for six months, raising more than £5,000, and has organised a fundraising night on March 15 at the rugby club in Yew Tree Drive.
There will be an auction and raffle with items such as signed rugby shirts and other memorabilia on offer.
Tickets cost £5. To book, call 07739 458774 or email: firstname.lastname@example.org To donate to the cause see: www.virginmoneygiving.com/kfw22