“Oh, Hannah.” So many hundreds of times I uttered these words during her short, intense life. I’ve said them over and over again since her passing – 10 years of “Oh, Hannah.” My loving, sweet baby brought us so much sorrow and so much joy.
This morning, I’m once again saying “oh, Hannah”. We sit here in the precipice of the future of our country. For the next 4 years, but likely for decades to come.
Hannah is now 10. She was born a decade ago, into a family who loved her infinitely, with a body that wasn’t able to survive without significant intervention. More than a decade ago, gene and stem cell therapies were showing potential and expectations for the new technology were high. The solution for her disease would have been there if only we’d had the science to diagnose her condition and the stem-cell and genetic therapies to fix the mutated gene that caused her seizures.
It wasn’t until after her death and subsequent autopsy that we learned about the spontaneous mutation of the ATP1A3 gene. It will take significant funding (primarily from the NIH) for science to be able to move this gene therapy work forward. As this article in Nature puts it, we need gene therapy to correct a genetic blip.
I am heart sick and tired today. Hannah’s life touches many of the areas that are glaring issues with the Trump Train mentality.
- Healthcare should be a right not a privilege
- Science is real and should be funded
- Women should be able to make the best choice for their body
- Disability rights should not be debatable, and someone with a disability should never be scorned or mocked
I know this election is not over. I have faith that every vote will be counted and those millions of voters who trusted the system and mailed in their ballot will have the same rights as someone who stepped up to a machine yesterday. Biden/Harris may very well win. Dear God, I hope so. And yet like so many of my friends and family, I weep for our country and the disparity between our thinking and that of the Trump world. I don’t want to get Covid. I don’t want to see anyone else in our family become sick or die unnecessarily. I want science to be respected.
So on this, Hannah’s 10th birthday, I’m making a birthday wish on her behalf. Like every birthday wish, I’ll keep it a secret so that it can come true. Oh Hannah, let it come true.
