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…

About a year before Morgan got her diagnosis of NPC she was diagnosed with Ataxia, a symptom of NPC, she started talking about and having dreams about wanting to beat a bear. We all laughed it off thinking that it was crazy to want to fight a bear in real life. But it wasn’t until recently that she wrote a beautiful monologue in her theater class about beating that bear where we truly understood what the bear (the disease) meant to her and it touched our hearts. “In a world where this one little girl wants to tackle a bear a specific black bear. She is big and bold but…

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,…

Dear 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…

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.…