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people Polly copes with zero protein diet When little Polly Smith was days old, a straightforward heel prick test revealed that she had PKU, Phenylketonuria. This occurs in 1 in 50,000 babies and is a genetically inherited, missing enzyme condition which means that Polly’s body doesn’t break down protein effectively enough for her to have any large amounts of protein in her diet. This means she has to have a carefully managed low to zero protein diet. Mum, Alice, had to stop breastfeeding immediately and feed her a special formula. “We were completely shocked and very anxious about what this might mean for Polly and how we would manage it as a family. We were referred to Great Ormond street where Polly had more tests and a full assessment. “ The family received fantastic support and they were advised that the treatment would be totally diet based for life in addition to daily amino acid supplements. Protein can build up over time, causing behavioural changes, irritability and neurological changes which could lead to brain damage so must be avoided. The early tests were absolutely vital as it cannot be treated over 9 months old. her diet is being constantly adjusted Now, Polly is 7 and overall her condition is managed well. Her diet obviously plays a huge part in her daily life, she has to have measures of food dependent on their protein contents and her diet is being constantly adjusted. Every two weeks she has blood tests to check her protein levels. If she has been ill, the levels will automatically rise so they have to be managed by diet adjustment. Alice says “A lot of her food is on prescription and I do a lot of home baking with special flour and meats. She likes pizza, veggie sausages and burgers like most young children but it does mean we can’t be spontaneous although restaurants go out of their way to help us so we just have to plan in advance. Her school, Castle Lower, is very supportive- she takes packed lunch and they keep her supplements polly with her younger sister Matilda and brother, Will for her and also have a provision of her sweets there for class birthday treats.” On a day to day basis, Polly copes really well and understands what she can and can’t have, parties and Christmas times are difficult as she can’t have party food. She tells people she has a “special tummy” and it will make her poorly. Great Ormond Street hold an annual Christmas party where all the food is PKU compatible and Father Christmas comes and Polly gets to join in all the fun and forget about it for a while! When she is 8, she has an opportunity to enjoy a youth hostel adventure weekend aways supported by the NSPKU Charity where they help her to develop her confidence and support her to start managing her diet independantly. Polly’s family worry it may become harder as she gets older but for now it’s manageable. Sometimes the tolerance will improve with age but she may need to continue her diet into adulthood. For now, though, they keep it all in perspective and like any other normal 7-year old, riding her bike and having fun with her friends is the most important thing! for more information on pKU visit: www.pku.com 12 Please mention Community Life when responding to adverts
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Page 1 and 2: Issue: 06 - February 2013 ...it’s
Page 3 and 4: Welcome ... With Christmas almost a
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