Today, May 10, 2018, officially marks two years since my brother received the phone call stating that he had been diagnosed with Leber’s Hereditary Optic Neuropathy; otherwise known as LHON. For those who do not know what LHON is, here is a brief description: LHON begins as a sudden, painless loss of central vision. It typically starts in one eye and progresses to the other eye in about eight months or less. This disease is the most common mitochondrial disease and is genetic.
If you have read Brandon’s story, you know that he no longer has central vision in either eye and has thus far not gained any vision back over time. HOWEVER, I am excited, blessed, honored, ecstatic and thankful to say and let you all know that Brandon is doing very well or as he would say “living his best life.”
With that being said, let’s rewind back to December 14, 2016 to see when and why Brandon started living his “best life” :)
“Our story began on December 14, 2016 when two coworkers took a chance on one another. They went on their first date. They spent that first date eating pizza and sharing stories about one another. The first date lead to many more over the next few months. The interest in one another just kept growing and has never changed since the day they met. It is not very often someone finds their best friend and the person they want to spend the rest of their life with. As the couple grew closer it was inevitable that they were going to spend the rest of their lives together. On August 25, 2017 the man asked the love of his life and best friend to marry him. She said yes! Welcome to the first part of Our Story. On April 14, 2018 we will begin another chapter of Our Story.”
On April 14, 2018 he lived out his happily ever after and married the love of his life, Meagan. Not only on that day, did he gain a wife, he gained a son. A son who has helped shape Brandon into the person he is today. At first, Brandon went through the trouble of not being able to “keep up” with Bentley. When Brandon and Bentley first met, he was only three years old. Bentley did not understand what was wrong with Brandon and why he was “different,” if you will. Bentley did not understand why Brandon could not read him his bed time stories. In fact, he did not understand to the point where he got so frustrated with Brandon telling him that his eyes did not work the way his and mommy’s do that Bentley came back with “you’re not my best friend anymore”. Talk about heartbreak…but soon enough, Brandon and Bentley both figured it out.
As Brandon’s little sister, I can truly say that I have never seen my brother so happy, IN HIS ENTIRE LIFE. Yes, that statement includes all the years that he had his vision. He lived out his dream of being a three sport athlete in high school, playing Division I baseball in college and becoming a Freshman All-American BUT he has now also lived out something that he never saw happening after he got diagnosed. I wish I could tell you how many times he told me he would never have a girlfriend again and that no one would want to be with someone who is legally blind. He went through the toughest, most darkest days of his life after being diagnosed. He said every negative thing you can imagine to me. He asked God what his purpose was in life now. He asked God why He did what He did to him. He asked God what his point was here on Earth now. He asked God why he couldn’t have been born blind instead of living 25 years of having vision and then it all being taken away. He asked God why He diagnosed him with a disease that does not have a cure. He asked God why He gave him something that took complete control of his life. He asked God why He had to pick a disease that left him with no freedom. He asked God how he was supposed to get to and from work now. He asked God how he was supposed to continue living his normal life without being able to go to the grocery store without someone taking him and waiting on him to get everything he needed. He asked God everything . . . everything negative that you could imagine. And then my family asked God so many questions. So many questions we didn't have answers to and in all honesty still don't have answers too. Why him? Why our family? What did he do to deserve such hardness?
But I think everyone in my family has come to agree that everything happens for a reason. Yes, we all say that throughout our life time. But until something bad or something life changing happens to you, the saying doesn’t really mean the same. I am now a firm believer that everything happens for a reason. We may not understand the reason behind it, but soon enough it will make sense. I believe Brandon was diagnosed with the disease to prove a point. Not to himself, but to hundreds of people. He is and will continue to make a difference in this world because of who he has become. My heart hurt for so many countless months for my biggest fan in life, my older brother, my better half, my biggest blessing and best gift my parents ever gave me. Watching and listening to him after he got diagnosed is something I never want to experience again. I felt helpless. I didn't have the answers he was looking for. I didn't understand “why.” But now I do and I think he does too.
Don’t get me wrong, he still has his hard days. “We all do,” as Brandon expresses and often says “harder days than I do.” But he is the happiest Brandon Elliott I have ever seen. With that being said I will end with this:
Thank you for accepting Brandon for who he is. You knew who he was before he got diagnosed and accepted him for who he became after he got diagnosed. That takes a special person and for that I can never thank you enough, my family can never thank you enough. Thank you for loving him, caring for him and accepting him. You came into his life when he needed you most. You trusted him with your son. You gave him not one, but two people who he could trust and be himself around.
To everyone who has supported us thus far, THANK YOU. You have probably heard me say this before, but a simple “thank you” will never be enough. The support, the prayers, the donations, the bracelet sales and the kind words is more than we could have ever asked for. If you are new to the page, I have come up with a customized silicone bracelet that reads “VI510N.” This spells “vision” however, the “sio” is replaced by 510 due to Brandon being diagnosed with LHON, a disease that has caused him to lose all of his central vision, on May 10.
As I stated before, I personally want to say thank you to all of you that have taken the time to read up on my brother’s story. He is one amazing individual with the brightest smile. My primary goal in life is to keep him smiling and constantly remind him of how wonderful of a person he is. But my ultimate goal is to raise money for a cure so that one day, my best friend and brother can see again. Until that day comes, I will patiently wait, but until then I will try my hardest to raise money to help find a cure for every single individual who suffers from this disease. Thank you all again and if you wish to buy a bracelet and/or donate, I thank you ahead of time. You all will make a difference and for that I can’t thank you enough.
APRIL 14, 2018 - ELLIOTT WEDDING: