Last week my son, Joshua, would have been 17. We lost him almost 3 years ago after his lifelong struggles with complex medical challenges. That included being born with a small head and smoothing on his brain, a neurological condition called microcephaly with simplified gyral pattern. While my son had a variety of medical issues, this certainly was the most challenging, impacting his ability to develop and function on a daily basis.
When he was born in 1999, this condition was highly rare and mostly unknown. My wife and I traveled to the University of Chicago soon after his birth to meet with a specialist (Dr. William Dobyns) to help obtain a complete diagnosis and understand more about his condition. He was very helpful providing as much background as was available at the time. What we learned is that the most accurate view on what his life would be like was the experience of each day.
Fast forward to today and microcephaly is in the headlines. Researchers are examining a possible link between the Zika Virus and babies born with microcephaly. There have been over 4,000 cases reported in the South American regions where Zika is pervasive. My wife and I have been watching with a strong sense of interest as the causes and effects of microcephaly are being broadly discussed.
My son was a gift. He was the strongest person I have ever known and continues to inspire me on a daily basis. I wouldn’t trade one moment with him, even during the hard days. However, as a parent, it was heartbreaking to watch the suffering he endured. I don’t wish that on anyone. It is unlikely that my son was impacted by Zika, but we aren’t sure the cause and may never know. There are many factors including other viruses that cause microcephaly. They are all bad. Given the high probability of a link between Zika and microcephaly, and having seen my son live with it, I encourage potential parents in the affected region to take precautions, and hope for the necessary actions to stop the spread of it.
Joshua – age 7
Mosquito Image courtesy of SweetCrisis at FreeDigitalPhotos.net