Great Ormond Street Hospital Children's Charity

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Peter Pan's patients

Matthew

Cornflour is commonly used to thicken gravy for the Sunday roast, but for 12-year-old Matthew, it is keeping him alive.

Matthew suffers from a rare enzyme disorder, GSD type 1B (Glycogen Storage Disease), which means he is unable to store energy in his liver. This affects the flow of blood to his brain, so he is always tired and has some learning difficulties. He needs glucose throughout the day and night to stop him becoming hypoglycaemic and falling into a coma.

To keep his sugar levels up, Matthew takes cornflour mixed with milk every few hours, and must snack every two hours between meals. At night, a kangaroo pump by his bedside pours glucose into his stomach for 11 hours, so Matthew has learned to sleep through the endless beeps and humming of the machine.

Such is his courage and tenacity that in 2002 Matthew received a Child of Achievement Award, at his headteacher’s recommendation. Now a student at St Martin’s School in Brentwood, Essex, Matthew is making good progress with some learning assistance, but he will need to attend Great Ormond Street Hospital for glucose monitoring until adulthood.

Matthew’s condition is so rare - only 1 in 50,000 people carry it - that the Hospital is having to experiment with his treatment.

Michelle, Matthew’s mum, said: “It’s easy to control, but it’s also very easy to get out of control. In only 10 minutes, Matthew could go hypoglycaemic, so we have to carry cornstarch with us everywhere.”

The condition affects Matthew’s daily life in many ways. He is very forgetful, and needs to be nagged to remember basic things like cleaning his teeth. A bleep on his watch reminds him to take his cornstarch. He can only walk short distances, although this is improving, and he is immature for his age, relating better to younger children.

The family moved from Newham to Hutton in Essex for a healthier environment and Len, Matthew’s father, has had to give up work to be on call for Matthew 24/7.

Matthew loves visiting GOSH for his check-ups, and is a big fan of Peter Pan.

"I had the outfit and the sword when I was little,” said Matthew. “I’ve got all the videos, and like Peter Pan the best – I’d love to fly and go anywhere I want without getting lost!”

Matthew’s dad Len is also fond of the Peter Pan story. “Like Peter, I haven’t grown up yet.”