Rare diseases – such as Phenylketonuria (PKU) – are often overlooked, but for those suffering from them, they can be life-altering. This is why Simon was very proud to host the National Society for PKU in Parliament yesterday to mark International PKU Day 2017.
PKU is a genetic condition that affects roughly 1 in every 12,000 people. Those living with PKU need to subsist on a low-protein diet of mostly prescribed foods. Not adhering to such a diet could lead to a number of harmful symptoms, including brain damage and learning difficulties.
At the event, Simon was lucky to meet some remarkable people, including 12-year-old Charlie Box (pictured), who gave a really impressive and moving speech about what life is like living with PKU, but also how the drug Kuvan has transformed his life for the better.
Simon learnt from Charlie and others that many of the things we take for granted – such as going to the supermarket to buy our weekly shop, going out for a meal, going to a kids’ party, or going on holiday – are a huge challenge for those with PKU and their families, and are possible only with careful planning and support.
In his speech at the event, Simon said that "societies such as the National Society for PKU – through the dissemination of information and other means – exist to help with such planning and support, and, for that, they deserve our praise, and our support. I hope to keep up my support for this great cause in the years ahead".