My brother, Manuel, is 19 years old, and we know that he has been affected by Hunter syndrome since he was eight years old. Luckily his story is very positive because he is part of the one-third whose Hunter syndrome’s mild.  He is very intelligent and has no problems with his brain.

Hunter syndrome is an inherited disease that commonly affects boys. This rare disease is characterized by a build-up of long-chained sugar molecules (mucopolysaccharides) that have not been properly broken down. There are two forms of the disease: early-onset and late-onset. The late-onset, milder form of Hunter syndrome causes less severe symptoms to appear later in life.

Since Manuel started taking Elaprase, his situation has became even better. He just says that he would like to be a little bit taller, but he is growing and will certainly become taller than me! He has the capacity of making people fall in love with him, so he has a lot of friends.

In July, he received his diploma, and now he goes to a university. Always very happy, he loves life and never feels different from anyone else. For him, the disease has never been a problem. He’s simply wonderful, and I think his story could be important for other people like him!

1 thought on “For Manuel, Hunter Syndrome has Never Been a Problem”

  1. Lauren N. says:

    The two of you are some of the greatest parents I know! Hadley has huge purpose and because of you two, will thrive in every situation. Love you all!!!

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