This year we attended our first Ara Parseghian Medical Research Conference in Tucson, Arizona. I’m sad to say that the first day was spent locked up in our room with the flu bug. But after we were able to go about as normal. Morgan had decided that a room of doctors and scientist felt too much like school and spent most of her time hanging out with new friends in the hang out room. I was able to attend a full days worth of conference and was exceedingly grateful for the army of scientist and doctors fighting in behalf of those affected with NPC. In my head I kept calling…

From kindergarten to 12th grade. Morgan persevered through it all! A lot of hard work was finally realized as Morgan was able to walk just like the rest of her friends to receive her diploma at graduation. Although a hard and trying year with many of her significant physical and cognitive challenges she held her head up high the entire year and gave the all famous thumbs up at graduation. Of course no high school graduation is considered complete without senior pictures. Thanks to the talents of Kelli Packer Photography, we get a glimpse her inner beauty in these magnificent photos.

Morgan’s Make-A-Wish took place in Florida. Her wonderful wish granters gave her a 6 day stay at Give the Kids the World Village 3 Days at Disney World, 2 Days at Universal Studios and 1 day at Boggy Creek doing an airboat ride. The Give the Kids the World Village was our first stop, in which we immediately fell in love with all of the selfless volunteers that worked there in which made our stay amazing. We got our own little villa with endless activities and food. Morgan loved having root beer floats every day after breakfast. The next few days were at Disney World where Morgan spent trying to…

Shortly after Morgan got diagnosed with NPC, she was referred to Make-Utah. Morgan’s wonderful wish granters came to visit her bringing her some yummy treats and to begin the wish making process. Morgan’s first task was to come up with three wishes. 1. Something to have 2. Something to be 3. Somewhere to go. Morgan has always been easy going and pretty much satisfied with what she already has. So after a lot of thinking she came up with her three wishes; 1. To go to Disney World 2. To see Taylor Swift 3. To have gluten free goldfish crackers. And Morgan couldn’t have been happier!

Thursday, Morgan and I boarded another plane to see another doctor for another medication that might help treat the symptoms of NPC in Chicago. Friday we met be Dr. to discuss her symptoms and if she would be eligible to partake in a expanded access trial of the medication. So good news! She qualified and will be taking another med. that should be able to help with her muscle control. Chicago Pizza! After the appointment Morgan let me know that she was hungry so we went to grab some authentic Chicago pizza. Yum! Why don’t they have this in Utah?

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.

This summer Morgan was able to escape to BYU Provo, for a little taste of college life at FSY and to live a whole week without numerous doctor visits and therapy appointments. Morgan was more than glad to get away to just be a kid again. They both agreed that this is something that they would love to repeat again in the future as service missionaries for the Church of Jesus Christ of Latter-Day Saints.

One thing that we’ve learned along this journey is that life is precious, and the things that matter the most is family and memories. So with the new diagnosis of Ataxia, we felt that we needed to make as many memories as possible. So off to Kauai we go, making some sweet memories. Most of the trip Morgan was just content to stay near the Condo. But we did get her to go on a boat ride with grandma and grandpa. We set sail on a sunset cruise, we spotted a few dolphins and got very wet. All the commotion made Morgan very tired. Next we flew to Pearl Harbor.…