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February 4, 2024Morgan’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. Our adventure began at 3 in the morning for our 6 am flight. Where we were greeted by some more wonderful people along the way. 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 fill up her autograph book and riding on endless rides. One of her favorites was with Olaf in which she shared him one of her favorite jokes. Q: What happens when Olaf throws a temper tantrum? A: He has a melt-down. We really had know idea what a daredevil Morgan was until she started riding the rides at Disney. It was fun seeing her smile. Hollywood Studios was another of Morgan’s favorites it was a place where Morgan got to meet some of her favorite Star Wars Characters and ride some pretty awesome rides. Darth Vader trying to convince Morgan to come over to the Dark Side. She was pretty adamant about not joining. 🙂 Another fun Star Wars moment was being able to make a droid. Universal Studios was pretty amazing. They organized personal Meet and greets with the characters and we had our own personal escorts that walked us to the front of the line for each ride that went on. Another favorite of Morgan’s at Universal Studios was casting spells at Harry Potter World and riding Hagrid’s Motorcycle ride with her brother and dad. Disney and Universal Studios was full of good food and fun memories. The last part of our trip we were able to go on an airboat ride at Boggy Creek, which had many activities from panning for jewels, walking through a butterfly garden, feeding alligators, eating alligator and going on a airboat ride to look for alligators. After one weeks worth continuous fun and endless activities, one exhausted Morgan was anxious to come home to be with her puppies. Thank You Make-A-Wish! [...] Read more...
November 2, 2023Shortly 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. So on Saturday, Jenna took Morgan out to get a drink at Fiiz, and then Morgan’s wonderful wish granters snuck in with loads of gluten free treats and gifts and waited until a slightly confused Morgan came through the door and then they revealed which wish that they would be granting. And Morgan couldn’t have been happier! [...] Read more...
August 14, 2023Thursday, 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? [...] Read more...
July 28, 2023In 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 the turkey legs at Disney World 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. Then before we said good bye to Florida. 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 no trip is complete until we found the LDS temple in the area. So we found the Orlando Temple along 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 30 minutes and then it was done and then we were able to go in the park. We didn’t get a wheelchair this time but Morgan was done after just a short awhile 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 . . . . [...] Read more...
July 11, 2023We 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, consultations, gait testing, balance testing and a lumbar puncture just to name a few. Although exhausted from all the poking and Morgan finished triumphantly and was able to squeeze in one more extra study to make a little extra cash on Functional Near-Infrared Spectroscopy which is a noninvasive approach that study’s study of brain oxygen utilization. With one extra day before we had to get black on the plane we were able to do a little sight seeing. First we traveled the my old childhood homes and then we went to DC to see the Lincoln memorial, the Whitehouse and the National Zoo in which Morgan was so excited to see an Andean bear. [...] Read more...
July 2, 2023The 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. [...] Read more...
June 29, 2023Dear Friends and Family,   Some of you have been asking about Morgan.  On April 6th of 2023 Morgan was diagnosed with Niemann-Pick Disease Type C. Neimann-Pick Type C also known as NPC is a ultra-rare neurodegenerative autosomal disease in which Morgan inherited through both sides of our family. The disease is a malfunction in the cells of the brain, liver and spleen, in which cells fail metabolize fats and cholesterol in which they need to grow and reproduce more new cells These cells will eventually die off and accumulate causing damage to the cerebellum and liver and spleen.  Symptoms of this malfunction are numerous and include include balance and coordination issues, swallowing difficulty, speech and hearing loss, vertical eye palsy, the loss of memory and cognitive skills and seizures and liver disease. NPC is described as a fatal ultra-rare disease where the symptoms are treated and currently there is no cure.  As of now we are doing all we can to learn about NPC by going to conferences and by participating in clinical trials whenever possible.   Fortunately Morgan hasn’t experienced all of these and may never experience them, for the disease affects everyone differently. Morgan started her symptoms of having slurred speech when she was 3, eventually school became more difficult and Morgan’s eyes and started being affected. In recent years, walking and swallowing liquids has become more of a problem where we started questioning the doctors more. A year later after extensive bloodwork, MRI’s and Genetic testing we came to the conclusion that it was NPC. This recent diagnosis has been difficult for our family, particularly Morgan who is very private person who has never liked being the center of attention. Doctor and therapy appointments have been numerous and often unwanted by Morgan. Although she is slowly adjusting to her new life as the ultimate guinea pig, she let’s us know often that she’s had enough of the poking and prodding and that she’ll handle the disease the way she wants it to be handled. These appointments are often exhausting and overwhelming, and she often just wants to do something else just take her mind of it.  We all really appreciate the abundance of love from our family and friends. And are thankful to all of those who have and will contribute to well being of Morgan to make her journey a little easier. Morgan is very social and as a senior wants to spend her last year of high school hanging out with friends and going on dates.  Ideas have come up about doing a fund raiser to help with medical costs which we really appreciate but after talking with Morgan she would like to keep her of diagnosis and this website between her family and close friends for the time being. For now, we’ll be posting updates on Morgan’s diagnosis and a place for you to ask questions or offer additional support and when Morgan feels more comfortable about her disease, we’ll spread it to the social media for additional support. Love, Michael and Jeannine [...] Read more...
June 16, 2023This 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. So, Morgan and her friend became roommates for the week, as they established new friends and attended churched based classes at FSY. 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. [...] Read more...
August 14, 2022One 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. Although exciting at first, there was a lot of walking involved and of course she was ready to go home. Food was also a highlight of the trip. Aside from having to share her corn with a hungry island chicken, Morgan found a Pomelo at the farmers market, which was something that she heard on Tick-Tock, but it turned out to be pretty sour. Hawaii turned out to be what would be one of her most favorite trips. When asked why she said that it was because it was so peaceful. [...] Read more...