We drove up on the Saturday, leaving Moomin at home and confused with Grandma, to see Dr Lara and start treatment. I cried again when we saw the GOSH entrance. We found her in Rainforest Ward.
She was wonderful and very reassuring. She explained that PKU is an inherited metabolic disorder and, in very very basic terms, Gremlin cannot process protein effectively. She would have to follow a protein restrictive diet (advised for life) but that if she did she would develop healthily and live a 'normal' life. If she did not, a particularly amino acid found in protein called Phenylalanine, would build up in her body and cause 'brain damage'. There were those words again. She also said, jokingly and in another reassurance effort, that if you were going to get a metabolic disorder, PKU was the best to get.
Wow.
The list of what she wouldn't be able to eat was quite overwhelming at first. Meat, fish, dairy, wheat, soya......
What on earth could she eat? More of that later.
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