Josh and his mum are real heroes.
Last week on television I met a child suffering from Prader-Willi syndrome. His name was Josh and he was delightful, a joy to be with.
He is six years old but has the girth of a 12-year-old because Prader-Willi means he has an insatiable appetite. His brain doesn't tell him when he is full and even when his daily intake is cut to 600 calories his body lays down fat.
Lindsay, his mother, must be on duty 24 hours a day because, at six years old, Josh can't understand why, when he is ravenous, he can't eat whatever comes to hand.
Her cupboards must be locked, leftovers binned immediately and work benches be up a height.
His siblings know they cannot leave a lunchbox unattended for a second or eat a chocolate bar in front of him.
His mother's life is arduous and made more difficult by the comments of people who think she just allowed her son to become obese because she couldn't be bothered not to.
Prader-Willi has other drawbacks, muscle weakness and learning disabilities among them, so Lindsay's burden is great and only alleviated by the fact that he's such a smashing lad.
Let's hope thoughtless people will hold their tongues in future and not pass comment on conditions they simply don't understand.
However, when even government reports talk of children with genetic disorders "choking on their own fat" as though they had been allowed to simply eat themselves to death, what hope is there for enlightenment among the general public?
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|Publication:||The Journal (Newcastle, England)|
|Date:||Jun 22, 2004|
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