"I Am. . .So Much More Than You See!"

One of my favorite things to do is travel. Whether it is to Myrtle beach or Israel the memories that I have made on my trips have been amazing. However, traveling with a physical disability can be tough and it requires a lot of planning. Going out of the country can also be a risk because other countries do not have to follow the same physical regulations that the Americans with Disabilities Act requires.  The following are some travel tips that people with disabilities and their families should consider when planning a trip: 1. Do you need assistance or a wheelchair in the airport? I have found that going through the airport can be very stressful. You usually don't know where to go and it can be a very crowded and overwhelming environment. Not to mention, I always seem to be at the last gate in the terminal.  2. Do you need to take a pre-board to get on the plane? I always take a pre-board so that I have more time to walk onto the plane from the gate and I don't...

As any high school student prepares to go to college it can be an exciting but scary time. This anticipation can be especially daunting for a student with a disability. As a result of being unbearably nervous about attending college, when I was a senior in high school I made a rule in our house that we could not talk about going to college. I was extremely nervous about living independently, having roommates and handling the academic rigor of the college environment. After 5 and a half years on a college campus and attending both undergraduate and graduate school, I would like to provide some tips on how to survive college with a disability. 1. Contact Disability Support. Make sure that you contact the disability support office at your university a couple months before arriving on campus. You will want to go through the process of disclosing your disability to the department, so you can receive accommodations in your classes and housing. 2. Advocate Advocate Advocate! I canno...

As a person living with a rare disease, I feel that it is my job to spread awareness about the disorder I live with everyday. While Mitochondrial disorders and other rare diseases do not receive as much attention as diseases like cancer, they are still extremely important. This is why I make it my life mission to advocate for those who are too sick to speak. My family and I strive to accomplish this through fundraisers and walks that raise money for research but that also spread awareness to those who may not already know about the disease. This is why I would like to shed light on a baby that has recently made world news. Charlie Gard is an 11 month old baby that is at the center of an international controversy between his parents and his medical team. Charlie has Encephalomyopathic Mitochondrial DNA Depletion Syndrome , which is a very rare Mitochondrial disease. The basis of the controversy is that the doctors want to take him off of the ventilator that is keeping him alive be...

As we traveled home yesterday from Mitochondrial Medicine 2017, I sat in the car and reflected about my time at the conference. The first thing I thought was, "WOW... I feel rejuvenated and hopeful about not only my future but the future of all of the affected people that I met." It was so interesting to see the range in which the disease affects people. Some of those affected look totally fine on the outside but have debilitating affects from the disease, such as "mito crashes." Others are unable to walk, talk or eat independently. I think the stories that broke my heart the most were those where the individual was completely fine for the first years of their life and then something triggered the disease. Can you imagine going from playing sports and being able to socialize with friends in the typical manner to not being able to walk without assistance? In short, this is a rare and devastating disease that needs a cure. My favorite session of the conferen...

This week my parents and I will travel to Alexandria,Virginia to attend the annual United Mitochondrial Disease Foundation Symposium.  I have dealt with Mitochondrial Disease my entire life and I am so excited to meet people who also have this disorder. While I know that most of us will have very different symptoms, I believe that we will feel a connection that is very unique. Mitochondria are the power houses of the cells. When the mitochondria do not work properly, it can affect various parts of the body including the brain, heart, liver and muscles. Personally, my neurologic system is affected and as a result I have difficulty with my gait, balance, vision and speech. Interestingly, my doctor told me that there are only a few people in the world that have my specific type of Mitochondrial Disease. I believe that we always feel a strong connection to those we have things in common with. Although I have not met many people in my life who have Mitochondrial Disease, when...

Imagine trying to get into a restaurant with a walker in one hand, the door in the other hand and a huge threshold to push the walker over. This happened to me and trust me I felt very accomplished when I made it over that Everest of a threshold. I have made many observations about the world of accessibility (or un-accessibility) since I started using a walker. 1. There are very few handicap spots in parking lots and often times you can't find a spot. What is the point of going through all that trouble to get a handicap sticker if many times you can't even find a parking spot? 2. Most places don't have handicap door openers. This has not been an issue for me because my physical therapist taught me how to open doors with the walker. However, my special education alarm goes off every time I go into a door without a handicap button saying, "how would a person who uses a scooter or a manual wheelchair get into this door?" 3. There is one cutout in the sidewa...

Imagine being 16 years old and all of your friends are getting their driver's license and hearing from both your eye doctor and parents that you will NOT be able to drive. How would this make you feel? Let me be real. . .I have shed many tears over the fact that I cannot drive because it limits my freedom substantially. However, I have found other ways to get around that are not as convenient but get me where I need to go. Before my back surgery, I took many things that I was able to do for granted. However, six weeks after my surgery and after having a major setback. . .I was not taking anything for granted. Every step I took and every word I spoke became an effort. I vividly remember walking to dinner on vacation and literally not being able to move another step because I was so tired and my brain was not letting my feet move. My dad was walking in front of me holding my hands and cheering me on but I literally felt like I could not move. However, I did not give up and made...