Oliver and Sam (MPSII)

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 can’t straighten their fingers. Oliver wears hearing aids as his ears can’t hear properly.

 

This doesn’t change the well known ‘selective hearing’ that most children have! Having Hunter’s doesn’t stop them from being full of fun and mischief, just like other children!

The boys have regular hospital appointments to check the bits of them that don’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 ‘magic medicine’ 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 don’t get sore each week. This is not a cure.

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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MPS Society

MPS House, Repton Place

White Lion Road, Amersham

Buckinghamshire, HP7 9LP

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Registered Charity No.1143472 & SCO41012. Registered Company No. 7726882.

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© 2019 Society for Mucopolysaccharide Diseases