Happily for me, our relationship didn’t finish with the story’s publication. And although I might not be any nearer to a definitive reply to that query, it appears clear, trying again over my emails and texts with Katie, that the knowledge spurred her to dwell within the second.
She did Polar Bear dips on Tremendous Bowl Sundays in Lengthy Seashore and took spur-of-the-moment journeys to Hawaii, Costa Rica and South Africa. In 2008, she left her occupational remedy work to turn into a affected person advocate at a pharmaceutical firm looking for to construct relationships with individuals who have motion problems. In 2017, she met Pope Francis, who was internet hosting households affected by Huntington’s for a blessing on the Vatican. In 2018, she ran the New York Metropolis Marathon to assist increase cash for the Huntington’s Illness Society of America. “Apparently I used to be too gradual to make it into the NYTimes,” she texted me.
“It undoubtedly made me have a look at issues in a different way,” Katie advised me not too long ago. “Each the conclusion that, ‘Oh, I’ve to plan for the long run,’ but additionally, like, ‘If I can do that enjoyable journey proper now, I’m undoubtedly going to do it.’”
Katie additionally sought to make use of her genetic data to have a organic little one with out passing on the gene variant. In 2011, she underwent two rounds of in vitro fertilization to create embryos with donated sperm, first securing a promise from a cousin to care for a kid ought to Katie turn into symptomatic sooner than anticipated. However in what her good friend Colleen recollects as a “excessive ache second,” all the viable embryos, when screened, turned out to have the disease-causing gene.
Katie put aside her hopes of changing into a mother or father. She stays estranged from her personal mom, who discovered solely by Katie’s take a look at end result that she herself carried the variant.
Katie has participated in each Huntington’s analysis research that got here alongside, together with touring to the College of Iowa for 3 spinal faucets. And he or she has suggested dozens of different folks with Huntington’s of their household. It’s a person choice, she counsels them. It could be simpler to dwell with out realizing. It simply relies on who you might be.
“I don’t advise them to not get examined, however I do advise them to simply, you already know — to consider it,” she advised me. “As a result of as soon as you discover out, you possibly can’t not discover out.”