Gene Edit Me, Please

My daughter was indeed "undaunted", unbreakable, until she suffered an iatrogenic stroke in 2022 at the hands of a careless physician. That injury left her progressively disabled and kidnapped her dreams. Even after that fateful medical procedure, however, she was a bright candle burning in the light and in the dark, always seeking and finding solutions, tapping into her scientific brilliance and her poetic sensitivity. She lived with hope and navigated life's challenges with grace and creativity beyond anything any of us have ever witnessed. As her mother, I was blessed to spend 27 years with her during which she was well enough to invest 110% of herself into everything she did, from splicing RNA to savoring a roll of sushi. She accomplished so much in that abbreviated so-called "well" period of her life, engaged in work in a Nobel Prize-winner's lab at Rockefeller, as an Amgen Scholar in the Liu Lab, and working at the Harvard Stem Cell Institute. However, her greatest accomplishment by far was her resilience, her power of creating the path to attempt to return to normal life after medical setbacks and to appreciate everything. She gained admission to ten top colleges because of her extreme brilliance and her passionate, excitable nature. Equally enchanting, however, was every step she took along the way. She always knew...she learned the hard way that walking, and so many other small gestures, are precious gifts. How she once cherished the gift of leaving evanescent footprints in the sand. There was nothing she took for granted. Blessed to live side by side with her for slightly more than two and half decades before her stroke, kept me constantly aware of how precious every single moment is. I can never thank her enough for that legacy.

As you read through this masterpiece of her story navigating Ehlers-Danlos Syndrome, authored in the months predating her stroke, you will become acquainted with this magnificent person, her genius, her sense of humor, her profound poetic nature, and her powerful resilience. I have no doubt you will be inspired.