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

Patient Stories

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?

Even staying at home watching television can be lonely because every advertisement for kitchen cleaners, life insurance policies or the latest, safest SUV seems to show toddlers taking their first steps into the embrace of beaming moms and dads. Doctors say Henry will probably never walk, talk or be able to do basic tasks like dress, feed himself or go to the bathroom unattended. When those ads come on TV, we tend to change the channel.

It's all still very fresh and raw. We are relatively new arrivals to the very brave special-needs community. We learned in September that one of Henry's genes called MECP2 is mutated, which means he doesn't produce enough of a protein his brain needs to control his mind and body. There is currently no cure.

For us, and undoubtedly for others facing similar challenges, the diagnosis changed everything in an instant. We mourned the future we hoped he would have of school, sports and perhaps a family of his own one day. We mourned the future we thought we would share with him. We had to come to terms with a new future, also full of love, but profoundly different.

Richard Engel’s story was originally featured on TODAY. To continue reading, click here.

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