Friday, October 11, 2013

Becoming More Than a Bystander

Me, (Emma) and my cousin, Seth
For any of you reading this post who follow Newell's blog, I'm Emma, his niece (Uncle Kevin and Aunt Catherine's daughter). When Newell extended the invitation for me to write this post, I was a bit hesitant. I didn't feel qualified to share my insignificant experience with Mito and how it has effected me compared to my cousins. But, for those of you who are LDS, as I listened to Elder Jeffery R. Holland's talk during the October 2013 Conference session, I thought about Seth and Sydney and felt impressed to share my experience with this terrible disease.

My story with Mitochondrial Disease starts when Seth was originally diagnosed. I remember my parents telling me that he had a disease and that was the reason he wore a bicycle helmet. 
Seth with his helmet and GoPro video camera
I don't remember ever being told what this disease was or what it did, or how it even effected Seth, Sydney, and, as we came to find out, Spencer. When we moved to Phoenix in February of 2012, I was ecstatic to be close to family for the first time in my life! My cousins came over several times for doctor's appointments between the time we moved in and December 2012, while I was essentially oblivious to the reason why they had to have tests.

Sierra, Sydney, and me at the Phoenix Marathon

Photos of the 2012 Phoenix Marathon were I ran the kid's race and helped with Foundation for Mitochondrial Disease Hope Flies booth

In December 2012, before we went to the AZ Mito Walk, Sierra showed me a video they had recently made about their journey through Mitochondrial Disease, but I still didn't understand this disease. Three months later, at the Phoenix Marathon, we worked in the Hope Flies booth but I still wasn't able to explain the disease to people who visited. Fast forward to the middle of August 2013, the first day of my eighth grade year. My Language Arts teacher was reviewing what we would be doing throughout the year. She mentioned that, after reading the book "Flowers for Algernon", we would be doing a project on diseases and disorders. I decided that I would do it on Mitochondrial Disease because I finally wanted to know what this disease is that has been such a burden on Newell and his family.
AZ 2012 Mito Walk
We finally got to the projects at the end of September. As I sat at my desk, the people next to me knew something was wrong as I stared at the computer screen, head in my hands, close to tears. I discovered that the form of Mitochondrial Disease, Leigh's Disease, that Seth and Sydney have is incredibly fatal. Sweet, funny, little Seth and beautiful Sydney. I just wanted to know why. I wanted to know why this would happen to these two amazing relatives. I wanted to know why it is a mystery about how much longer we will have Seth on this earth and why Becky and Newell had to live knowing that two of their children will not have normal lives and how they could even get up in the morning with the knowledge that this may be the last day they have with these precious souls.

I struggled with this knowledge, simply being a bystander, watching as my dear cousins struggled through this trial. I went home and read Newell's blog for the first time, read about the devastation they were struck with, cried when I read about Spencer's diagnosis and his giving up what he loved. I came back to school the next day, determined to no longer be an observer to their suffering. I researched and found out all that I could about Mito. I decided to start training for a half-marathon to be able to raise money for research done by the Foundation for Mitochondrial Disease as a Hope Flies athlete. I made a tile for TGen's new clinic called the Center for Rare Childhood Disorders and attended a TGen fundraiser at California Pizza Kitchen with my cousins. 
Holding the tile I made for the new TGen clinic, the Center for Rare Childhood Disorders
On the day I presented, almost everything went wrong. A few of my graphics were missing. A link I had wasn't working. I was nervous and I missed pointing out a few things on the Powerpoint. When I finished my presentation, I made sure to say how glad I was that Sydney and Seth were alive and that they were able to be in my life for the time being. While I got a good grade on the project, I was still not able to come to terms with the fact that my cousins would not ever have the life of a normal child and that they could eventually be killed by this disease that has no cure and no effective treatment. I prayed to know why this would happen to two inspiring, kind souls.

My answer came during the talk I mentioned earlier given by Jeffery R. Holland. During this talk, he said that Heavenly Father gives his strongest, sweetest souls the hardest challenges and that these souls will someday be perfect and no longer prohibited by these trials. I realized just how true this was for Sydney and Seth. They are two of the nicest, strongest, terrific people I know. I can't wait until the day I know them as the people they truly are and when they are no longer held back by this disease. I would love for this to be in this mortal life and the only way that could be is if a cure is found. Awareness needs to be raised. Over 2,000 people visit this blog a month.  If anyone who reads this post just tells two other people about the Belnap's story, that is more than 4,000 people who will now know about this disease in a single month. Please help raise awareness and save my cousin's life. Please, join me in helping any of those who have this disease and please, simply tell two other people about how dramatically this has changed my cousin's lives. Please help me save two inspiring, wonderful people. Please join me in becoming more than a bystander and become an advocate for those who have Mitochondrial Disease.

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