Why I started this blog was incredibly important to me. But it’s been years now.
Now we know that our D remains 1 in 7.4 billion. Our mitochondrial disease is not his primary diagnosis but a symptom of an underlying condition. Just another layer of the onion so to speak. As of 9/16 it may be a symptom of Kilf1a on the second chromosome (a mutation that both Hugh and I share). Not much has been researched about this mutation. As a matter of fact, the papers that have been published should not be googled. Especially by a parent. In none of the existing publications is there any correlation to a mitochondrial dysfunction that we have very clearly seen in Danny when we did his muscle biopsy in 06 and subsequently treated.
Again our Danny is on the cutting edge of science.
So we continue to put our faith in folks much much smarter than us.
And we put our faith in our middle Marrtian.
Mr D always continues to surprise us. And our team of “experts”
And we continue to document our lives. But now it’s also for the next family who happens to hear about KILF1A and our experiences so they may take our history to their docs as a clue for how the help their child….
So, seven months and almost 20,000 hits ago I started this public blog. I was trying to do my part to educate the world about our life, I was thinking that if I could give just a few people a glimpse of our day-to-day existence, maybe they would share and by the time Danny becomes an adult, the world would change a bit.
Then we lost Janie.
Kim’s cancer became worse.
So it also became a place where my children could know me better. Let’s face it, it takes years to understand decisions that the adults make in your life when you are a kid. Because of how tenuous things can be, this was also serving as a message to my children when they were a bit older. I was hoping to explain the why we do the things the way we do them, just in case.
Somewhere along the way, writing this and putting it into cyberspace became cathartic. Similar to “putting words in the bubble and watching the bad float away”
Here is the good, the bad, and the funny.