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MPS awareness day: Danny’s story

By Elisha Holt

The Yorkie has decided to help raise awareness for MPS. MPS awareness day is the 15th of May and campaigners are urging people to wear blue for the event. On our programme, our presenters wore blue ribbons throughout the programme in support of Danny, the 6 year old boy featured in our story.

Danny was 3 years old when he was first diagnosed with MPS type II Hunter, which that only affects boys. The disease is degenerative and causes progressive physical disability, which results in limited life expectancy. It means that sufferers cannot produce an enzyme which helps to remove natural waste produced by the body from the brain. It also effects the appearance of sufferers, with them tending to have a larger,  more prominent forehead, chubby rosy cheeks and a broad, flattened nose.

Danny’s mother, Sally, explained how she “thought that something wasn’t quite right, but it was all tiny little things that you couldn’t quite put your finger on.” She also described how Danny was later reaching milestones such as sitting up, crawling and walking than his older brother, however they were all still in the expected timescales.  Sally added, “the first few months were  just awful, particularly the waiting to hear,” describing it as “being like be on a roller coaster ride, when you go down and you’re stomach comes up into your mouth, but just permanently.”

Despite the sadness surrounding Danny’s story, there is hope. He is currently undergoing experimental treatment every month at Manchester hospital. Enzyme replacement therapy aims to intravenously give the enzyme missing to help patients do what a body without MPS would be able to. Danny himself is a happy little boy who enjoys playing football with his brother and cousins and loves to watch TV, and also touches the hearts of anyone that meets him.

 

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