Thankfully for me, our relationship did not conclusion with the story’s publication. And although I may well not be any nearer to a definitive respond to to that issue, it seems clear, hunting again about my e-mails and texts with Katie, that the info spurred her to reside in the minute.
She did Polar Bear dips on Super Bowl Sundays in Extensive Seaside and took spur-of-the-moment visits to Hawaii, Costa Rica and South Africa. In 2008, she remaining her occupational remedy function to turn into a individual advocate at a pharmaceutical company trying to get to establish associations with men and women who have motion issues. In 2017, she satisfied Pope Francis, who was hosting family members affected by Huntington’s for a blessing at the Vatican. In 2018, she ran the New York Town Marathon to assistance elevate dollars for the Huntington’s Condition Society of The us. “Apparently I was as well slow to make it into the NYTimes,” she texted me.
“It unquestionably made me search at matters in different ways,” Katie explained to me not long ago. “Both the realization that, ‘Oh, I have to prepare for the foreseeable future,’ but also, like, ‘If I can do this exciting journey proper now, I’m definitely going to do it.’”
Katie also sought to use her genetic awareness to have a biological baby with out passing on the gene variant. In 2011, she underwent two rounds of in vitro fertilization to build embryos with donated sperm, to start with securing a assure from a cousin to treatment for a baby must Katie grow to be symptomatic before than predicted. But in what her pal Colleen remembers as a “high agony minute,” all of the viable embryos, when screened, turned out to have the condition-leading to gene.
Katie set apart her hopes of becoming a guardian. She remains estranged from her personal mom, who uncovered only by Katie’s check end result that she herself carried the variant.
Katie has participated in each Huntington’s exploration analyze that arrived along, which include touring to the University of Iowa for a few spinal taps. And she has encouraged dozens of other men and women with Huntington’s in their relatives. It is an person decision, she counsels them. It may well be less complicated to stay with out knowing. It just is dependent on who you are.
“I never suggest them to not get analyzed, but I do recommend them to just, you know — to assume about it,” she explained to me. “Because when you obtain out, you cannot not find out.”