Community Voices Spotlight
Michael and Jeannine Hill
Parents of Morgan, NPC
Tell Us a Little About You and Your Family…
Hi! We are Michael and Jeannine Hill, parents of three amazing “super siblings” – Travis (31), Jenna (27), Spencer (23), and one incredibly resilient NPC warrior, Morgan (20). Our home is located in West Point, Utah. We have three very busy dogs, which always keep our house full of life: a Bernedoodle, a Shichon, and a Brittany Spaniel. Morgan’s diagnosis of Niemann-Pick disease type C has definitely shaped our journey as a family. While it has brought many challenges, it has also drawn our family closer together, reminding us to cherish every moment.
Sharing Your Family’s Diagnosis Journey
When Morgan was 16 years old, we began to notice that something wasn’t quite right, because she would stumble quite often while playing with the dogs and other daily activities were getting harder for her to do. It was small at first, but as it continued to progress, her hands would curl inwards while walking, and other symptoms were starting to manifest, and we were growing more concerned. We then spoke with her primary care physician, who referred us to a neurologist.
What followed was a long series of tests, and with each one we were hoping would explain the cause of her symptoms of ataxia, and each one coming back as normal. Still with no answers and increasing uncertainty, we made the decision to try one last test: whole genome sequencing, which came up positive for Niemann-Pick disease type C.
How did you first learn about the National Niemann-Pick Disease Foundation?
When Morgan was diagnosed, we had no clue as to what Niemann-Pick Disease was and quiet honestly, I was still in denial that it was even was NPC that she had. Our neurologist presented us with a list of resources to look through, and one of the resources on the list was NNPDF.
How has being connected to the NNPDF community supported your family?
With this new diagnosis, we didn’t really have anywhere else to turn, but we heard that there was a NNPDF conference in Orlando, so we decided to attend just for the purpose of acquiring more information about the disease. While at the conference somebody had mentioned that, “NNPDF is the best club to be a part of, that nobody wants to belong to” which was so true. Going to that first NNPDF conference probably was the best thing that we ever did since Morgan was first diagnosed with this dreaded disease, because being part of the NNPDF community has provided us with many essential connections of NPC experts and other families who are also trying to navigate through the disease.
What is one piece of advice you would share with a newly diagnosed family to help them navigate the road ahead?
Having a loved one diagnosed with an ultra-rare, progressive disease is incredibly hard – especially when no one in your immediate circle has ever even heard of it. You suddenly become a pioneer, navigating unmarked territory in search of answers and treatments, not only for yourself but for others who are already walking this path and those just beginning this treacherous journey.
Along the way, connecting with NPC experts and other families facing the same reality has been profoundly healing for us. While this journey has been difficult for our family, it is even harder for the person living with the disease. For Morgan, the progression of NPC has meant giving up so much – things most kids her age take for granted. As the disease continues to affect her body, many of those everyday experiences have become impossible.
Yet through it all, finding friendship and connection with others who share this journey has been deeply meaningful. Those relationships have brought comfort, understanding, and a sense of healing that reminds us we are not alone. Life is simply easier when you don’t have to walk the journey alone – when you have a friend beside you.