Not long ago, our Ben was a robust, friendly and energetic child who dreamed of being a farmer with a barn full of mooing Holsteins. His eyes would light up on visits to a local farm when the cows would approach the fence to eagerly accept the carrots he clutched in his hand. Ben's favorite toys were tractors, books about the pastoral life and his constant stuffed companion, Milkshake.
However, because Ben is missing an enzyme that breaks down a complex sugar called heparan sulfate, he may never farm his land and may soon no longer be able to do something as simple as say the word cow.
Ben was diagnosed with Sanfilippo Syndrome at the age of 15 months. As parents, we saw his early diagnosis as a blessing in disguise. We can be proactive in Ben's development and in seeking a cure.
Until recently, Ben had energy and imagination. But his dreams of chasing butterflies and a barn full of mooing Holsteins is slowly slipping away. Someday he will be confined to a bed and his world and dreams forgotten. The world deserves our gentle Ben and all others afflicted like him.
Ben's Last Day | Morning Breakfast | Ben's Words
Big Ben | The Farmers Prayer