Hello KIF1A Families,
We arrived in New York City on May 5th and got settled into our apartment then on Monday we dove into dose one prep. Our first week and a half looked looked like this:
It was a long week with a lot of hours spent in the hospital and waiting rooms but Sloane did great. She had no adverse reactions to the dose! We haven’t seen any changes yet but that’s to be expected with such a small dose. She will get her second dose on 6/6. This dose will be higher than her first. Hopefully I will be reporting back with some positive changes for our June update!
We have sprinkled in some New York fun and Sloane was so excited when her siblings and dad arrived! We will be here for two more weeks for dose two and follow up monitoring. Starting with her August dose (dose 3 and subsequent quarterly dosing) we will likely be flying in and out over a few days. As always, please reach out with questions!
With Hope,
Megan, Sloane, and Family
