I sometimes would sit at night looking at charts for NPC. There's a white line for pre-neurological symptoms, a grey line for neurological symptoms and sometimes a blue line for attempted interventions. Sometimes these lines are long, usually when there's no symptoms until kids are seven are eight. Marian is still only one years old, she doesn't have typical neurological symptoms but does have developmental delays - which means it's been in her brain somewhere already. Warning signs. The kids with lines in that category of early neurological signs are very short. They stop around age two, three or four. Sometimes six or seven. They stop abruptly leaving only empty space. These short color blocked lines are a life, a life of someone like Marian and Kamryn. Suffering. Ending.
We've been so lucky to see Marian start to come to life more after starting her treatment. There is no chart we can look at now to know what to expect. Instead we turn to stories from other parents. Sometimes the treatment stops the progression for a few years, sometimes it's led to some improvement, and sometimes progressions have been totally held at bay for years and counting. Kamryn lives in Alabama and her smile radiates through pictures and videos. She was diagnosed very young and is a part of the trial. She is an inspiration to us and her mom wrote a beautiful post about this struggle, living with fear and enveloping sadness and still finding strength, hope and happiness.
From Kayla:
Tonight, my mind is racing with thoughts I can't contain. I like to keep it real. So, here's a real post for all of you. This is raw and comes from the heart. I ask that you don't judge me as I share my life with all of you. Until you have walked in my exact shoes and live the life that I have lived, you would never understand. Over the years, I have spent countless hours looking up charts, data, articles, and research papers. If you added up all of the hours that I have spent doing personal research on NPC, there's no telling how many months worth it'd be. Now, this post is not about me, and I'm not trying to make it that way. I just want to express the heartache that comes with having a child with a fatal disease. When you look up the life expectancy of Niemann-Pick, there's a chart that you'll find. Kamryn falls in the early onset category. In total, I have probably looked at this chart at least 100 times. Each time, feeling pain that could never be defined. While I am a Christian and believe that God can do all things, reality is also constantly knocking at my front door. Sometimes, as Christians, we feel we can't talk about things because we aren't supposed to have anything less than a faithful, believing heart. So, again, I'm asking for no judgment. I am human. My daughter was born 6 years ago (one week from today). When Kam was diagnosed with NPC, I felt an overwhelming sense of desperation to save my baby. I tried to keep faith.. faith in a miracle.. faith in a cure. While I still cling to that, I now TRULY understand that my faith is in His plan. Whatever it may be. I'm keeping it real. Some of you won't like that I'm saying this, but I hope this helps people remember to be thankful. While many of you are simply worried about the party decor and design on your child's next cake, each year, we have had to wonder if there would even be one. So, we started celebrating half birthdays at the first 1/2 year mark. The chart I mentioned earlier shows that the expected life span for a child in the early onset category stops at age 6. Many of you probably don't know this. There have been many times that I've feared my child would not live to be 6. There have been doctors who did not expect Kamryn to be here with us this long. There is even a doctor who refers to her as a miracle. This is real life. I've tried to be faithful in God's plan. After all, she belongs to him. So, I'm here to tell you that in 7 days, my girl is beating the odds. Kamryn will be SIX! I have been blessed to have an amazing girl in my life for almost six full years. Thank God for that. Praise God.
- Kure 4 Kamryn on Facebook