We’ve had a request come through to help a 3yr old boy from Whitefield with complex Hunters Syndrome, also known as MPS11. This is a progressive disorder involving every cell in the body, it is also life limiting. Treatment for this condition is a weekly infusion intravenously of a special drug, which is a recombinant form of the missing enzyme.
Ronnie attends a special nursery a couple of days a week and has the use of their sensory room. He responds well to light and sound. His doctors feel having some sensory equipment at home would benefit him. His young parents are not in a position to be able to afford this so I’ve just placed an order for some sensory equipment to enable them to have a little sensory room at home for Ronnie.
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