Morgan’s Journey
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 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