Imagine living your life normally and then all of a sudden losing your vision.
Imagine being 25, living on your own, working at your dream job, being seven hours away from your family and becoming legally blind.
Imagine standing two feet away from your mom, dad, brother or sister and not being able to see their face or their smile.
On March 5, 2016, my brother told me he was having trouble seeing out of his left eye. As anyone would say, I told him that when he got back home, he needed to go to the eye doctor to get it checked out. He did exactly that, but unfortunately the eye doctor could not fix his vision like they can do for most of us. He was referred to many different eye specialists, while also getting multiple tests performed such as an MRI and spinal tap to ensure it was not something else causing his loss of vision.
On April 12, 2016, my mom and brother drove to St. Louis to see yet another eye specialist. While he was there, he had a full day of testing done to try and figure out what was going on. All of his tests came back normal. With that being said, this was all leading in one direction; to a very rare disease that does not have a cure yet. The only way to confirm this disease is through a genetic blood test. Therefore, on April 12, 2016, they took his blood and from that point forward, we had to wait weeks to get the results back.
Those few weeks seemed like years. The minutes seemed like hours, the headaches lasted for days and the tears did not stop running. We, as a family, felt helpless.
On Tuesday, May 10, 2016, Brandon received a phone call from his neuro-ophthalmologist in St. Louis confirming that he has one of the genes that diagnoses people with Leber’s Hereditary Optic Neuropathy (LHON), which is defined as an inherited form of vision loss. Although this news was heartbreaking and life changing, at least we now knew what was going on. The specialist in St. Louis had talked to Brandon about being a part of a trial in Philadelphia to try and find a cure for this disease. Brandon was all for it and willing to be a part of it, until we received that phone call stating he did indeed have the disease, but did not have the mutation that the trial was testing for.
Anyone who knows Brandon, knows how mentally strong he is. Brandon graduated in 2013 from Murray State University, where he pursued his life-long dream of playing Division I baseball while getting his Bachelor’s degree in Business Administration. He received a position at Sportable Scoreboards in Murray, Kentucky upon graduating and since then has started his life there. Thankfully, Brandon’s work has been incredibly helpful and willing to work with him through this process. Brandon still works on a daily basis. Yes, what used to take him five minutes to complete now takes him twenty minutes, but the kid has not given up.
His positive attitude about this disease has forever changed my outlook on life. I could not imagine being 25 years young and having this disease. He no longer has the type of freedom that we do and by freedom I mean the simple fact of grabbing the car keys and going to the grocery store to get items for dinner. He can’t sit back and relax on the couch after a long day of work to “watch TV.” In order for him to “watch TV” he has to be up close and by close I mean within inches of the screen, with his head tilted just the right way.
Thankfully, Brandon is the type of person who does not give up. I cannot even begin to imagine going through this life changing disease at 25 and I’m guessing for those of you reading this, you couldn’t either. So as you could imagine, this is a life changing disease for him, as well as our family. However, as his sister and biggest fan, I could not be more proud of how he has dealt with this situation. As I stated earlier, he can no longer drive, but he is still working on a daily basis to try and live his life like he once did. I have always looked up to my brother as a role model, but I look up to him even more now. His dedication, commitment and his positivity have led him to live a normal life once again, regardless of what has been thrown at him.
What most people don’t know about this disease is that it is genetic and gets passed down from the mother. With that being said, I as his sister, could potentially wake up one day and lose all of my central vision. I also have to worry about passing the mutation down to my own children, one day. Yes, it is scary, but watching my brother grow as an individual and continue to live his life and work every day, has allowed me to prepare for my future if one day I do become diagnosed. Obviously it will take time, but I will somehow get through it, just like my brother somehow gets through his everyday life of living on his own and overcoming every situation he is presented with, without being able to see.
For those of you that have stuck with me reading this, thank you! As 2016 came to an end and a new year started to approach, there was one thing that was constantly on my mind and that was the continuation of my brother’s positive attitude. And with that positive attitude of his came positive light; positive light for a cure, positive light in his future, and positive light for him to remain the great person that he has always been. As you could imagine, I have done a lot of thinking these last twelve months on different fundraisers I could do to help raise money and try and find a cure for this rare disease that only 35,000 people worldwide suffer from. As for now, I have come up with a customized silicone bracelet. This bracelet will read “VI510N” (vision) and within that spelling it has (510) as the letters. The background behind those numbers is the numeric numbers for May 10, the day he was diagnosed with Leber’s Hereditary Optic Neuropathy and the day he legally lost his “vision.”
As my brother always says, “He may have lost his sight, but he will never lose his vision.” By this he means that although he has legally lost his eyesight, he will never lose his path of life that he has always envisioned for himself.
I hope my brother’s story has inspired you and motivated you to never give up and keep moving forward regardless of what is thrown at you. Life is hard and life surely is not always fair but the most important thing to take away from this and learn is that you can continue to move forward. Trust the process, learn to accept the curve balls that are thrown at you and keep going. Stay positive, give it your all and always be thankful for what you have. One of the greatest kids I have ever met, a freshman All-American baseball player, my brother and best friend, randomly lost all of his central vision in a span of a few months at twenty-five years young. As hard as it was for him to accept this and the fact that he may never see again due to there being no current cure for this disease, he has not given up. Did he have his hard days? Absolutely. Does he still have hard days? Of course. More days than not he is having a hard day, but he has learned how to cope with life, how to cook without being able to see, how to do laundry without being able to see, how to shave his face without being able to see, etc. For some of you, you may be thinking to yourself of how easy some of those things might be. I sometimes find myself trying to do a task as simple as taking a shower with my eyes closed. It’s not easy; there is nothing easy about it; it is very frustrating. However, he continues to wake up every day and manages to get through the day. His days are our “average” good days. His days are tough, very tough, but he continues to smile and keep his faith. Let my brother’s story motivate you to keep going and to never give up, at anything in life. Continue to smile, continue to live life to the fullest and always, always, always count your blessings.
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 my face 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.
Where is Brandon now? On April 14, 2018 – Brandon married the love of his life, Meagan, and is currently living in Kentucky.
A special thank you to Shannon Elliott for allowing me to repost Brandon’s Story. This blog was originally published on HowHeSees.org.(May 10, 2018) Check out the website to read more about Brandon.
Buy a Vi510N Bracelet to support LHON research for a cure!
Dearest Maria……it seems this disability seems to have an optimistic and can-do attitude….as shown in your approach and Nathan’s……thank god you have that trait, if it were me I would just give in and lie ing bed till the end………this was a very loving post….love from your hero worshiper