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HealthAllergic to protein! The little boy who could die if he eats a burger

Allergic to protein! The little boy who could die if he eats a burger

At just 18 months Alfie was diagnosed with an ultra rare condition that means eating a burger or even drinking too much milk could be fatal.

Alfie Smith, 7, is pictured at hs home in Awsworth, Nottinghamshire on January 26 2015.  Little Alfie Smith is desperate to play football with his friends – but he suffers from a rare condition that means eating a burger or even drinking too much milk could damage his brain.  See NTI story NTIBURGER.  The seven-year-old is allergic to protein, which has stunted his development – leaving him unable to feed himself, walk or control his movements.  His parents are now desperately trying to raise £18,000 to fund pioneering treatment abroad which could help Alfie learn to walk. The genetic condition, called Glutaric Acidemia type 1, means the youngster's brain can be damaged if he eats more than 19g of protein a day – about three eggs, a small chicken breast or a pint of milk.  It means things that normal children enjoy – such as a quarter-pounder burger – are off the menu and instead Alfie has to fill up on plates of cabbage and carrots.  Last year he had an eight-hour operation in London to insert electrodes into his brain and a battery pack put into his stomach to cut down his involuntary movements by helping his brain to communicate with his limbs.  His family, from Awsworth, now want to take him to a specialist clinic in Slovakia for a type of physiotherapy which is unavailable on the NHS.

Alfie suffers from a rare condition that means eating a burger or even drinking too much milk could damage his brain

The youngster has been diagnosed with Glutaric Acidemia type 1, a rare condition that affects just one in 100,000 children.

It means that should he eat too much protein acid will accumulate in regions of the brain which control movement.

If he consumes more than 19g of protein – the equivalent of a single chicken breast, or three eggs – he could suffer deadly brain damage and die.

So while his friends play football and tuck into fast food Alfie is forced to fill up on cabbage and carrots.

He lives on a strictly controlled diet, which includes very little meat – even too much broccoli, cauliflower or bananas could damage his young brain.

Michelle, 40 said: “He just wants to be like everybody else.

“He has started asking why he can’t have what his friends are eating.

“At McDonalds he could only have one chicken nugget and a few chips and that would be it. One single burger could leave him brain damaged.

“He can’t go on sleepovers or birthday parties, because it would take too long to explain what he can’t eat.

“We have to be really careful about what we eat in front of him and I try and make other things seem as normal to him as possible.

“He can’t have potatoes, but I give him carrot and swede mash so he thinks he’s eating normal mash like us.

“He plays football in a walker with wheels at school and if he was just to be able to have a kick around and walk to school with his mates that would be an incredible thing.

“That’s all we want because he’s an amazing kid.

“He’s brilliant and he’s always happy, he’s my amazing little boy and he’s an inspiration.

“In a funny way he’s the one who keeps us going, sometimes we want to sit down and cry and it’s him who’s laughing. But he keeps us going and fighting for him.”

“We want to give Alfie the best opportunity in life and if anybody is prepared to help us we would be very grateful.

“People don’t understand it, even the medics don’t know much about it.”

Alfie Smith, 7, is pictured at hs home in Awsworth, Nottinghamshire on January 26 2015.  Little Alfie Smith is desperate to play football with his friends – but he suffers from a rare condition that means eating a burger or even drinking too much milk could damage his brain.  See NTI story NTIBURGER.  The seven-year-old is allergic to protein, which has stunted his development – leaving him unable to feed himself, walk or control his movements.  His parents are now desperately trying to raise £18,000 to fund pioneering treatment abroad which could help Alfie learn to walk. The genetic condition, called Glutaric Acidemia type 1, means the youngster's brain can be damaged if he eats more than 19g of protein a day – about three eggs, a small chicken breast or a pint of milk.  It means things that normal children enjoy – such as a quarter-pounder burger – are off the menu and instead Alfie has to fill up on plates of cabbage and carrots.  Last year he had an eight-hour operation in London to insert electrodes into his brain and a battery pack put into his stomach to cut down his involuntary movements by helping his brain to communicate with his limbs.  His family, from Awsworth, now want to take him to a specialist clinic in Slovakia for a type of physiotherapy which is unavailable on the NHS.

Adorable Alfie is an inspiration to his family

Alfie’s condition has left him unable to feed himself, walk or control his own movements and stunted his growth.

It also means he is so frail that even a simple cold could leave his life hanging in the balance.

Last year the youngster went under the knife for eight hours as surgeons inserted electrodes into his brain and a battery pack in his stomach to try and cut down his involuntary movements.

Dad Dave, 46, a plumber, said: “I want him to be a normal little boy, running around playing football.

“It’s been tough and he’s getting older and older and getting heavier and heavier.

“Trying to walk with him and teach him things is harder now.

“It would take a lot of strain off us and we would be able to keep giving him the best opportunity you can.”

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