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Henry's story: How our son's disability could lead to a scientific breakthrough

It can be lonely having a child with special needs, a condition my family is still coming to terms with. It can be lonely when you walk down the street and see parents with their "normal" boys and girls skipping or scootering to school and knowing that your child's life, and yours, will never be like theirs.

It can be lonely when you go to play groups and catch a glimpse of another parent noticing that something isn't quite right about your child, that he isn't walking or talking or sitting up straight, but not knowing what, if anything, to say. Should we bring it up to break the ice? Do we need to explain what's going on every time we meet someone new? Do we need to go into the specifics that our 2-year-old son Henry was recently diagnosed with a genetic disorder that doctors have told us will require him to have life-long care on the level of caring for a baby?


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