2 Weeks Post-Diagnosis
It has been 2-weeks since Loic’s diagnosis. I spent the first 4 days crying and the next 4 days in shock. Since then, it has been a consistent ebb and flow between anger and sadness. It is actually amazing how dehydrated you get from losing tears. The only positive thing that has come of this thus far is that I am present. I notice every smile, every look, every touch, and every giggle. I am no longer thinking about how tired or frustrated I am when my kids wake up in the middle of the night or are screaming at each other. It is now just another opportunity to hold them and be with them. I’ll take it.
How do we change Loic’s trajectory? Can we raise million dollars and speed up the research process for a cure? Do we need more? How do we buy our children’s lives? We easily fundraise this kind of money for politics every year. Certainly we can for dying children?
I read an article today talking about how research for drugs to cure a rare disease can take 10 to 15 years and cost over $1 billion dollars. (See Paul Frysh and Deborah Gastfreund Schuss, Rare Disease: Could Existing Drugs Turn the Tide (May 18, 2023). Most of our PKAN babies won’t make it that long and many have already paid the price of time and money. Other parents have successfully brought PKAN to the media, raising awareness and making national news. Why don’t we have an answer yet? Can money change that? Do we have an answer and just don’t know it? Or it is faith in a miracle? People keep telling me miracles happen, but it is really hard to have faith in anything right now.
I keep wondering if I am the parent with a newly diagnosed child that is just too naïve to see that nothing is going to be different for Loic. The cure will come, but not in his lifetime. Am I signing up for a race I’m destine to lose? I guess I don’t know, but I could not live with knowing that I didn’t do every single thing I could to protect him. I have to do something.
We’ve had incredible support from our family and friends during this time. There isn’t a day that goes by that someone doesn’t check on us or send us a meal. Everyone knows there is nothing they can do to change our heartbreak for Loic. I have never felt so much love and compassion from our community. It truly is the only thing keeping us going for Loic. Everyone loves Loic and maybe love will be his miracle.
