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FARAFARA Cure FA

Dillon Head

DillonHead1Name: Dillon M. Head

Age: 19 almost 20 (December 19)

Where do you call home? This is difficult because my parents are divorced and I’m close with all of my family members. However, I live with my mom and my stepdad. We are currently in the process of selling and moving to a home that was built handicapped accessible. It is all one level and is a bigger house and will be easier to get around because it doesn’t have stairs. I live in New York but I have family and friends who I count to be family; so I have to say my home is the world!

Education (degree(s): I graduated high school in 2014, which feels like forever ago already. I went to a small town school, which had 250 students from Pre-K to 12. Brookfield Central School is where I have my roots planted, but my tree is still growing. My future goals are honestly possibly never going to be easy to stick to just one thing. I have what they call: Peter Pan Syndrome, which has been a blessing. I’m currently enrolled in the New York Institution of Photography, which is all online. It has been great and I have been learning a lot more. Photography is one of my passions and will always be one with or without FA. One of my other goals is to get a degree in some sort of education. I love kids, but elementary school is not my calling. Teaching 7-12 or even higher education is more what I’m leaning toward. In January, I will be going back to college in Syracuse, New York; SUNY Onondaga Community College. It has not been easy, but I will do it and encourage anyone else with FA to go, if you're able to. When it comes to FA, it can add stress, depression and frustration to anyone on a “good day”. However, I don’t want it to “take over my life” anymore and I’m done having that feeling. It’s easy to get, especially if you just stop pushing and giving up. YES! FA is not easy to deal with for anyone, but I have come to realize that it can’t control me or my future. I have gained a lot more HOPE over the past 6 months then I have had the past year! 

What is your relationship status? I am currently single! Hopefully soon, I can find the man of my dreams. One day, I would love to have at least two children, and this disease is not going to stop me. I'm currently living with my mom and stepdad, which has been great, don’t get me wrong. I have always been like a social “butterfly” my entire life and while I’ve been home, the amount of interaction with people has been less and I can’t believe I’ve gone this long with not interacting with kids my age.

How long have you known you are living with FA? (When and how were you diagnosed?) I was diagnosed in the beginning of my senior year and it was completely horrifying. I did not know much about the disease. I was diagnosed by a doctor at Strong Memorial Hospital in Rochester, NY. He directed my family and I to a doctor at CHOP (The Children's Hospital of Philadelphia). When I got there, I saw the neurologist. He described and told me the correct information. After being diagnosed at Strong, I did a lot of reading on the internet and I got myself scared. During my appointment at CHOP, I knew I was going to be okay. When people ask me about the disease, I tell them that I have a neuromuscular, degenerative disease that affects me in every way, shape and form. What was also helpful to hear from the doctor was that people can be tested for it. People ask me how I got it and I tell them that it is all genetics. I first started noticing symptoms in the summer before I had been seen by a dr. I will never forget it. I was walking at the state fair with my mom and some other family members when the state troopers walked up to me, questioning me and asking if I had “been drinking” and “what’s in your cup?” (It was just iced tea). The officers had me in custody for a good 5-10 mins. Honestly, I was scared like crazy. I had no idea what to say at that moment. When they asked me to have a seat, I said: I have some health issues that affect the way I walk and talk. After they heard that, they apologized and let me go. After that night, my mom and I talked along with other family members and decided I should get checked out by a specialist to figure out what my health issues really were. All throughout high school and even middle school, everyone thought I was a klutz and had horrible hand eye coordination. For years prior to first seeing symptoms, I played all kinds of sports, I had trouble, but I got a lot done on the field. All the kids who picked on me for my lack of athletic abilities were right. So for my sophomore, junior and senior years, I got medically excused from participating in gym class. College, for me, the first two times have been the craziest and worst times for me. I was a student at OCC (Onondaga Community College). The last few months when I was there were not easy, I had to take two medical leaves from school to get healthier and figure out a plan. At the beginning of the Fall Semester of 2014, my body was fighting the mono virus (which I had no idea that I had). It lead into me getting a horrible case of strep throat and tonsillitis. Due to me having FA, I was told that my immune system is weaker and germs and viruses can be extremely bad for me. Scoliosis has started and I cannot write as good anymore, all I write is my signature. My speech has also started to slur.

DillonHead2I have always known I was special for many reasons. I have been openly gay since 7th grade... wish I waited, but then again, I don’t. For many years, I thought if I was not open about my sexuality, would the bullying and everything stop? My story is different because not only am I proud to be myself, I am a survivor of suicide, but I’m a Fighter. What I find sad, but mainly confusing, is that once I told my classmates about my disease, bullying and everything that comes with stopped. Many people say that it is good that the bullying stopped, but really it isn’t! I had to deal with my whole high school years being bullied and then I say I have a disease and it stops!? Good. However, why did it take that to make people realize that bullying me was wrong and it is not allowed. The past is the past, so since being diagnosed with FA, it really opened up the world to me and I feel like my eyes can see things that I never realized before. I'm proud that I'm still alive and able to communicate, walk and enjoy my life right now. Because there are people of the same age or younger or older than me that are not so lucky.

Are there any others in your family with FA? Sadly, there has been one other family member with FA, my distant cousin, on my biological father's side. Jason was only 37 and passed away on May 25th, 2015. Jason's life which was full of so many great moments and were told to me by his brothers, mom, dad and friends! He was able to conquer so much in life. He got his Bachelor’s from one school and then went to another school and got his Masters. He never gave up and wasn’t afraid to fight. It took me a while to understand and grieve over his passing, but Jason's HOPE of fighting to find a cure I believe has been passed on to me. With both his and my HOPE, I am on a mission!

Describe an adaptation or transition you have had to make due to living with FA. I had to change a lot more then I actually can think of but some things that are the most important are: 1- Not to be so sad. 2- Don’t feel any less then someone else. And 3- Realize who, think about, ask for and love all the support and everyone who is willing to help.

DillonHead3What do you like to do to stay active and what type of exercises work for you to stay strong? This is funny! “Stay Strong” is my slogan, and the object or symbol I use to represent it, is an anchor. The anchor was chosen because it is made to be rough, tough, stable, heavy and symbolic, I say that it’s made to do all of that and it weighs things down but the thing it doesn’t weigh down, is me. What I try to do for exercise is what people do at a gym. I know my limits and what I can and can’t do. I don’t run or jog, I’d like to but right now I can’t.

Do you have any hobbies or special interests? Some of my hobbies are: School Work, Reading, Listening to Music, Watching Movies and critiquing them. I really like to spend time with friends and family, My passion is photography and being able to help people in my own way.

What is a good trick to make daily life easier? To make every day and life easier, I have found and been given some HOPE and don’t plan to lose it. Like I said, life isn’t easy and it really takes some rough roads for people and can sometimes come to a stop. When it does, that just means you're not trying as hard as you can. So when I think about life, which is everyday, I look at My Anchor and realize it’s giving me HOPE and I don't even think about it.

When FA gets you down, what do you think/do to feel better? When FA gets me down, I turn to family and friends to talk to, vent to and sometimes, I go out and take pictures and find my zen.

What is one way living with FA has POSITIVELY affected your life? It has taught me not to let people’s opinions, comments and thoughts bother me anymore. This is me and I have found that it’s better to be confident about yourself then let other people try and control your life.

What is a favorite motivational quote of yours? “Whatever you do, do it well. Do it so well that when people see you do it they will want to come back and see you do it again and they will want to bring others and show them how well you do what you do.”- Walt Disney

DillonHead4What piece of advice could you give to a person who has been newly diagnosed with FA? I have to say that “No one has given a book of life and especially not one for both you and I. You can get through this and it’s going to be hard, it may be easy at times and that’s great, but in order to keep it great everyday you have to find yourself something to give you HOPE and just let help you out. It’s not going anywhere. Don’t give up, ask for help, it doesn't hurt, independence is great but it is also great to be given help and makes other people feel good. Don’t be afraid, there’s no book for life!”

Ask your doctors to point you where to look and where you can learn about the disease, what kind of fundraisers they do, how you can meet other people with FA. Be able to gain the knowledge of the disease before you put too much on your plate. FA is going to be hard to deal with but who knows, what helps someone else with FA might help you as well. Don’t ever think you're alone at all!

What is the first thing you want to do when a cure/treatment for FA is found? Well doesn’t everyone want the same thing? I will be screaming and doing as much jumping for joy as I can do as long as it’s safe! However, the absolute first thing I would like to do is send as many possible thank you's to not only my friends, family and supporters but mainly to all of the wonderful doctors, organizations, pharmaceutical companies, researchers and other FA patients for all that they have done to fight and be hopeful.

"I have FA but FA doesn't have me." What does this statement mean to you? Well it’s true, FA doesn’t have me. At time it may seem like that, but FA will never win! It takes lives and is difficult but with the research and studies going on, I think that were close and we can’t give the hope up.

Tell us a little bit more about you…Soon after being diagnosed; My family and I decided to create TEAM DILLON, which was put together to fight and battle this horrible disease! “Stay Strong” is our motto and I will continue to do so for the rest of my life. I have had some troubles throughout this discovery in my health and at times over the past two years it has personally affected me socially and emotionally. Friedreich's Ataxia is a harsh battle to fight and many have come to sad ends while fighting to "STAY STRONG". I would like all of you to know, I have honestly felt like giving up and letting the disease take control because it's that easy, but I have discovered something else out that I want to spread to everyone else that is going through something life changing... There is HOPE! If it be religious or not, everyone finds it out in different ways. This disease has to be fought and conquered, the amount of research that is going on through CHOP & FARA, would not be possible if it weren't for all of the donations and the amounts of HOPE you all have given me. I will not let this disease control me, I will not just do nothing about it, WE WILL FIGHT & WIN! From this moment on, TEAM DILLON is no more! It is now; TEAM HEAD! -This battle will be fought for both Jason & I.

We are stronger TOGETHER! Find a new Meet the Community interview every Monday.

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About the Author

The FARA Ambassador Program

The FARA Ambassador Program

The FARA Ambassadors are a united team of patient volunteers living with FA who are committed to supporting FARA in the search for a treatment and cure.
 
Together we seek to know more about FA, and FARA so we can be prepared to represent the community when the opportunity arises; speaking at events, to volunteers, potential donors, scientific groups, pharma partners, media interviews and other awareness and fundraising opportunities. We believe support is key to continued success toward our ultimate goal of treatment and a cure. Participants in the FARA Ambassador Program are passionate about building and upholding relationships within the FA community.
 
The FARA Ambassadors are positive, supportive, peer representatives for the FA community, actively raising awareness and funds for FARA. To learn more about the FARA Ambassador Program or to have a FARA Ambassador speak at your event, please contact: info@cureFA.org.

 

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