NNPD Conference in Florida
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 classes because much of the lingo went way over my head.
In the afternoon we were able to take a break from all of that and took a moment to go to Disney World.
Despite of the heat and the humidity Morgan quickly became a fan of the Magic Kingdom. We entered the park with a DAS pass and dad pushing a wheelchair for Morgan which turned out to be a huge blessing, because Morgan’s energy level was extended from the usual 8:30 pm bedtime to 10:00 pm and she rode 11 rides.
It’s something that would have never happened before because walking a huge park like Disney World would have taken all of the energy out of her. Thanks to turkey legs and Swedish fish from Uncle Charles and Crisanne, Morgan was in heaven.
Saturday we slept in a bit from the night before, and then we were up and at it again with more meetings to help us learn to manage the disease better. Morgan although she attended some she wasn’t too interested in attending more, She thought that it was to much like attending school in the summer so Jenna took her around the resort to explore things to do.
Saturday evening was filled with fun as we attended a Gala Dinner and spent the night dancing and saying good-bye our new friends.
We thought that it would be cool be able to say that we’ve seen both oceans so Sunday we set off to the coast to see the Atlantic ocean.
And we found the Orlando Temple on the way.
Monday we set off to see Sea World, although the weather wasn’t good. Just as we were arriving at the park it started down pouring, Florida style, which lasted for about 15 minutes and then it was done and then we were able to go in the park.
We didn’t get a wheelchair this time and Morgan was done after just a short while of walking and wanted to go home. So we finally broke down and got her a $40 dollar rental wheelchair and she was fine the rest of the evening, and we were able to watch the Orca shows and look at the sharks, seals and dolphins.
Tuesday morning we all woke up and packed for home and I believe that Morgan was the first one packed because she was more than ready to go home to hang out with her puppies who were waiting for her at home.
The conference turned out to be a huge success as we were able to learn a lot more about NPC, make connections with other families who could related to the stresses of dealing with NPC and we even ran into another doctor based at the Rush hospital in Chicago, who wanted to see Morgan. So once again we’ll be flying out to another doctor appointment next week. And so the journey continues . . . .