|Me, (Emma) and my cousin, Seth|
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|
|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|
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|
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.