Diagnosis: MPS II - Hunter

Country: France

What makes this individual special, unique and a role model for others?

Theophile, born in July 2001, had an older brother Vianney who died from the same disease in Jan 06. Since December 06, Theophile has been receiving the enzymotherapy and is now in pretty good health except on the neurologic side. This therapy helps him to live a better everyday life with less pains, difficulties for walking, even running or simply eating. As family, the therapy is helping us to live with the disease and gives us hope for the future. After some difficulties to find an adequate place for him in Paris, where Theophile now lives, we have endly found a center for disabled children specialized in that sort of kids.

Proudest accomplishment

Theophile has a lot of courage during the enzymotherapy (once a week during three hours). He is always happy days ...and nights sometimes. He is able to walk in the forest or in the mountains during hours even if we, parents and family are exhausted.

Words of wisdom about living with MPS

There is at least one way to live with that type of kids : as they won't live eternally, even those with a therapy, we need to "seize the day" totally from the first moment in the morning to the last moment at late night. In every day, there is a good to find that we need to accept and explore. Facing difficulties, those kids are really remarquables and this must lead us on the way to wisdom by watching them happy against all odds.

Ayşe Nihan Uğuz