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Oliver andĀ Sam

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Oliver and Samuel are brothers and they both have MPS II Hunter disease.

They have Hunter disease because their bodies are missing a special enzyme.

This makes their skin cells clog up and causes stiffness of their joints and thickens up their skin and other organs as well as making it harder to breathe.

They find it harder to run than other children too and they canā€™t straighten their fingers. Oliver wears hearing aids as his ears canā€™t hear properly.

This doesnā€™t change the well known ā€˜selective hearingā€™ that most children have! Having Hunterā€™s doesnā€™t stop them from being full offun and mischief, just like other children!

The boys have regular hospital appointments to check the bits of them that donā€™t work as well and they have operations to help when they need them. Some clever scientists have developed a special man-made enzyme to put into their bodies just like the one they are missing, which helps keep them healthier than they would be without it.

I have learned how to give them this ā€˜magic medicineā€™ as we call it, so they can have it at home which is much better than spending hours at hospital. The enzyme takes just over three hours to drip into their bodies through a portacath - a special box which means their veins donā€™t get sore each week. This is not a cure.

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