Family health issue
June 17, 2022
We are going through a difficult health situation with our son Jonah, who is 3. He has struggled with walking and talking over the past year and a half, and we did not get care earlier for him due to our pediatrician telling my wife Kristy not to worry. Over the past month we have finally gotten him to a neurologist, and into semiweekly appointments for 3 types of therapy (physical, occupational, and speech). Unfortunately, last week an MRI revealed that his cerebellum is too small. There is substantial loss of volume over both hemispheres and the vermis. So, we don't know whether he has a degenerative condition that will leave him wheelchair bound or even cut his life short, or hopefully a static condition where his cerebellum will remain the same and not atrophy. We don't have any known family history of this, no exposure to teratogens, and no issues at birth, so it's a mystery at this point, described as cerebellar loss of volume/atrophy with ataxia / ataxic gait. We are also hoping this isn't a genetic condition. My wife is 8 months pregnant with our second child (another boy), and so if it happens to be a recessive genetic disorder for which we are both carriers, there would be a 25% chance of our 2nd child being afflicted.
These have been the toughest 2 weeks of our lives. It really puts things in perspective. I tend to be a workaholic and am even more regretful of not spending more time with Jonah as I toiled to complete my PhD doctoral dissertation in Jonah's first year of life and then became heavily involved in politics as a congressional candidate and political party chair. I don't want to repeat the mistake of not putting Jonah and Kristy first.
I do want to get back in the habit of daily writing for this newsletter. I will have more for you tomorrow.