We will be hurtling down Micklegate in a soapbox car to raise money for the MPS Society.
This is a charity dear to our hearts as Sally’s son, Danny, was diagnosed with Mucopolysaccharidosis (type II, also known as Hunter syndrome) in 2015 when he was only 3 years old.
Danny is a cheeky boy with an infectious smile. When he is not giggling at the TV or playing football he is usually running in the opposite direction to everyone else. He lives life in the moment and greets anyone he meets as a long lost friend. He has no idea that he isn’t expected to live beyond his teenage years.
MPS is a genetic disorder caused by the body missing a particular enzyme. It means that waste products build up in every area of the body, affecting the heart, lungs, liver, joints and brain. Whilst there are treatments available for MPSII - Danny has a 4 hour infusion every week and is on a clinical trial for a similar enzyme - they aren’t easy options and there is no cure.
The MPS Society helps to fund research into new treatments and provides vital support to families faced with a diagnosis of MPS and other related disorders. For more information visit their website on www.mpssociety.org.uk
To learn more about Danny you can subscribe to our blog (www.hunterslife.co.uk ), find us on Facebook www.facebook.com/mpshunterslife or watch this short documentary about the family https://www.youtube.com/watch?v=73UA-y-vV8M
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