In July, we were able to travel to Florida for the 2023 National Niemann-Pick Disease Conference in Orlando. The first day was spent checking in to our hotel and checking in with the conference and getting to know our new extended family, the NPC families. We were very impressed on the overall friendliness of the attendees as we all shared our journeys of how NPC has affected our loved ones. Friday we spent the morning at more meetings listening various NPC updates, various research projects, and medicated interventions now which are now made available to NPC patients. I am currently regretting not paying more attention in my biology and chemistry…

We got a chance to participate in our first clinical study at the National Institute of Health in Bethesda Maryland. We arrived at the Children’s Inn where after a long day of traveling we were excited to find somewhere to rest and hang out for the next week. The next day began bright and early with a consultation with Dr. Porter in which we discussed Morgan’s extensive health history in detail. The rest of the week Morgan participated in an array of tests these tests were long and lengthy lasting a whole week of continuous appointments from different professionals ranging from neuro psych testing, hearing and swallowing tests, blood work,…

The past 18 years just flew by. And it’s been a beautiful journey. This years birthday was spent at the Hill family reunion at Bear Lake with some of Morgan’s family. The theme of the party was of course “Beat the Bear” as it’s theme, where lot’s of love was poured out in Morgan’s behalf. It’s tender moments like these which bring bits of heaven into our lives in some trying times.