This is a letter I got from a good mate whose granddaughter is a PKU sufferer.
Maybe you can help too...
July 11, 2008
Charity Marathon for PKU Research
As discussed, my grand daughter Logan, now 2, was born with Phenylketonuria (PKU).
This inherited genetic life long condition with no known cure, stops the processing of phenylalanine (Phe), an amino acid found in protein. This means Logan must have excluded from her diet any food containing protein, so she can live a full life.
PKU research, as a rare condition, is charity funded. The doctors, consultants and dieticians at Birmingham Children’s Hospital, are world class and work tirelessly with Logan and other PKU patients to understand this more.
On October 26th Logan’s Dad and my son in law, Mark Richardson, will run the Birmingham, UK, half marathon to raise funds for PKU research at the Birmingham Children Hospital’s metabolic disorders department.
Doctors now know PKU is caused by a defect enzyme, called phenylalanine hydroxylase (PAH) This enzyme works to process Phe found in protein-containing foods. In order for PAH to work, it needs BH4, a molecule that is normally naturally present in the body. The PAH enzyme defect means it can’t find BH4 to do its job, so too much Phe builds up in the body.
For a PKU afflicted person, when such foods are consumed the unrestrained Phe build up becomes toxic to the brain. High Phe levels, for extended periods, leads to severe mental retardation and other serious side effects, such as vomiting, irritability, eczema, seizures, psychological and behavioural issues.
PKU sufferers must exclude all foods containing Phe from their diet. Meat, egg, dairy, and nut products, are obvious, but also most wheat products, pasta and bread, some fruits such as oranges and cherries, are off the list too.
Mark has set up a “just giving” sponsorship page. If you would like to sponsor him then please click on the link and you will be directed to the page. http://www.justgiving.com/markandmartinspkurun
You offer to contribute can be accepted in any currency, but GBP’s may be the best. Additionally, it would be good if you could mail this on to others you know.
Obviously this is a cause close to me and as such any support would be welcome, and while there is still time to think it through.
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