Changemaker Profile

Chloe and Ronnie

Ronnie has MPS II, which is also known as Hunter’s Syndrome. How I describe it is that he has a bin ban, so he has been born without an enzyme in his body that filters out toxins and waste. His treatment helps clear out some of the waste products and stops his binbags piling up.

Before he started his treatment, he stopped walking because his hips were so sore, his knees were sore, he had hearing aids because he couldn’t hear, he couldn’t speak at all. He was tired and he was going to bed all the time. If he didn’t have the treatment he has now, he would be a lot worse than he is, so we’re thankful, and really grateful that he does have it.

I would like to raise more awareness of the different rare conditions and make it easier for people to get diagnosed, so you don’t have to wait so long and fight for everything.

Artist Profile

Sarah Peters

Sarah Peters is a London-based illustrator/artist focusing mainly on human forms and showcasing a depth of emotion thorough body shape, expression and colour. She works in pencil and inks and well as digital art.

This campaign isn’t just about us – it’s about you. If you live with or care for someone with a rare disease, share your experience on social media using the hashtag #IAmNumber17.

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