A COUPLE are trying to raise £30,000 for research into a life-threatening pancreatic condition which affects their son.

William Orr, one, has a rare form of Congenital Hyperinsulinism (CHI) and needs around the clock care from his mum, Amanda Dean, 33 and dad, Douglas Orr, 41.

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Young William, from Accrington, has to be fed every four hours a day and have his blood sugar levels checked at the same time, as the condition causes excessive insulin to be pumped into the body.

This causes glucose to be removed from his blood and starves the brain and other vital organs of fuel.

The youngster can suffer from jitteriness, lethargy, but in more serious cases can go into shock and suffer from seizures and fits.

William runs the risk of serious brain damage, and the condition is also potentially fatal. He regularly has to visit the Royal Blackburn Hospital if the episodes do not stop quickly.

Ms Dean said that there was currently no cure, but the £30,000 she’s trying to raise will go a long way into research into the condition.

Ms Dean said: “It’s extremely rare. He’s got what’s called ‘diffuse CHI’ which is the worst case scenario, his entire pancreas is producing too much insulin and it can’t be removed. It involves around the clock care from us, he needs to be checked constantly otherwise there’s no other way of knowing if his blood sugar levels are low. It’s very tough, my older son, James, who’s eight, gets upset when he sees his little brother have an episode. It affects him as well as he’s had to grow up quickly and learn how to help get his brother out of shock.”

As a result of the episodes, William has developed at a slower rate than other babies and is three to four months behind. After a month on IVs and testing different medicines, William responded well to one of the available drugs called Diazoxide, but soon needed a higher dosage than would normally be given to someone so young.

He is currently receiving the highest dose the doctors are willing to give, but this isn’t enough to fully prevent the onset of CHI symptoms.

When having an episode, Glucagon is applied to the gums and then William’s blood pressure is checked to see if it is returning to normal.

Ms Dean said: “The money is so important because it will provide funds for vital research which could be able to help William and other babies like him.

“I’m also taking part in a sponsored 10k run at some point to help raise more money, we would appreciate every penny we get.”

The Lancashire Telegraph’s health expert, Dr Tom Smith, said: “This is a really, really rare condition and which will only affect one or two babies born a year in the UK. A child is born with the genetic makeup to produce more insulin and it proves to be extremely dangerous for it." “The brain is starved of energy and this can lead to a slower rate of development and in a lot of cases, a loss of development.

“It’s a very serious problem and it’s very unfortunate for any family whose child has this condition.”

To donate, visit www.indiegogo.com/projects/cure-kids-with-chi.