Jeremy and Destiny's Story "An Unexpected Love Story"

randy bacon, 7 billion ones, ataxia telangiectasia
randy bacon, 7 billion ones, ataxia telangiectasia

DESTINY:    I was born with a very rare genetic disease, Ataxia-telangiectasia (A-T), which effects only around 1 out of 100,000 births worldwide. Jeremy has the same genetic condition as me.  While I was growing up I didn't feel any different from other kids, even though I knew I needed a little more help with things and I had problems walking. However, my family and classmates never treated me like I wasn't a normal person so I didn't realize that I was different. At least not until my family and I moved to Ash Grove, Missouri when I was age13. It was an eye opener for me. People would either ignore me or stare at me like my condition was contagious. I just wanted to be normal for the first time in my life. I became so shy and insecure, I just wanted to scream at all of them that I was no different from them! It depressed me and all I wanted was to go home, back to South Carolina. Every time I would go out in public I would just keep my head down so I couldn't see people staring at me. When my mom noticed this, she told me to just look people in the eye and smile, that maybe they didn't know how to act around me and maybe people were just worried about how to approach me.

randy bacon, 7 billion ones, ataxia telangiectasia

JEREMY:   I do have Ataxia-telangiectasia (A-T), just like Destiny.  I went to school kindergarten through my senior year in a little town in Missouri called Marionville.  I went to normal public school, not a special school.  Because of having A-T, I went to some special classes but I also went to normal classes.  While I was out of the room in my special classes my teachers would talk to the students about me, about my disease.  The students knew what I had so they never made fun of me.  I appreciate the teachers for that.  I made a lot of friends while I was in school, but my best friend was a girl by the name of Bailey.  She was always nice to me, and I had a little bit of a crush on her.  After high school around Christmas in 2008 she was killed in a car accident.  I cried for Bailey and her mom, and I still have a picture of her on my dresser.

During high school I was in choir, and I received the Sunshine Award from the choir.  The reason I received this award was the class was always at the end of the day, and I would always come into the class with a big smile on my face.  Choir was my favorite class, because it was at the end of the day and my teacher was pretty funny.  The choir allowed me to sing in their concerts and competitions and we actually won 1st place at competition.  That meant a lot to me that they allowed me to sing with them along with my friend Teresa who had Down syndrome.  We were never excluded.

Despite my disease, I had a lot of fun in school! My Senior year I was an honorary football member, I was given a jersey and I wore it on Fridays, and I also received a football with all of the players signatures.  Also that year I went to prom with my friend Megan. She had a boyfriend and he was in the military at one point during prom she sat down and cried, which made me sad… I wasn’t sure what to do…. I don’t know what to do when women cry.  Megan cheered up and we danced some more. Then they announced prom queen and king and I was elected Prom King, I didn’t even know I was nominated.  I was really happy, because I was prom king of my own prom and I didn’t know anything about it.  When they called my name all of my classmates cheered, and after that I danced with the prom queen, my friend Desiree.

randy bacon, 7 billion ones, ataxia telangiectasia

I also enjoyed doing the special Olympics and won a lot of medals.  I was younger when I was in it and was still using my walker.  I was really fast with my walker, and people called me "Hot Wheels".

First I was walking and using a walker, and then in junior high I was in a wheelchair.  I miss walking.  I can’t do most stuff that other kids can do, and that makes me kind of sad.  When I walk I have to hold on to my family, my chair, or a bar.  My legs are not very strong, and my balance is bad.  Sometimes I fall trying to get from my chair to other places. I have had lots of bruises, a few sprains, and some broken toes….. but I never cry over having A-T.  A-T sucks, because I don’t like relying on others to help me.  

However sometimes I am thankful for my A-T because I have been able to go places, meet famous people, and make friends that I wouldn’t have met without it.  I wouldn’t have met my girlfriend Destiny or my best friend Garrett if I didn’t have A-T (they both have A-T just like me).  Garrett lives in New Mexico and I don’t get to see him very much but when we do see each other which is about once a year I am so happy to see him.  Garrett and I met at Camp Barnabas we were in the same cabin and went to camp every year until we became too old.  So now we have vacations together.  Destiny and I met a year ago because she wanted to know more people with A-T, and we lived close which unusual because it’s a rare disease.  We became friends and on her birthday I asked her to be my girlfriend and she said yes, actually her brother Steven typed yes -  does that mean I am actually going out with Steven?  I love Destiny and just one of the reasons I do is because she understands me and A-T.  I also love her because she is as wild as I am.  She puts all the love stuff on facebook, we also text each other a lot.  She is my first real love.  I did love Bailey, but I don’t think it was as much as I do Destiny.

randy bacon, 7 billion ones, ataxia telangiectasia

DESTINY:    People only see the girl in the wheelchair but I am so much more than that. A-T has taken alot from me like my ability to walk, to talk without slurring my words. I have hand tremors that make it hard to do a lot of things but it doesn't define who I am. I am a 21-year-old woman who can finally say, after years of depression, anxiety and pain from medical procedures, that I love my life. I am starting to walk again after surgery on my legs and I never thought I would be able to do that because A-T is a progressive, terminal disease. Jeremy and I am dating - Jeremy is a wonderful man and he treats me like a queen!

JEREMY:    If I had to give advice to someone with A-T, I would tell them not to think about the bad stuff, but think about the good stuff that goes with it.  That’s what I tell myself.  I got to spend a week in Costa Rica with Oceans Healing Group.  I learned to surf with my best friend Garrett and new friend Jacob, woke up in the morning to the monkeys howling, zip lined through the rainforest, saw my sister slam into a tree, went four wheeling through the countryside, and made some amazing new friends.  I couldn’t have done that without my A-T family.  My sister and sometimes my brother and I do 5k’s together.  They push me in my chair through the race.  We just did a 5k at Disney this year and while we were stopped people told us that we inspired them… that makes me feel proud and happy that I can inspire someone.  At one race when we took off from the starting line myself, and other kids with A-T all of the people waiting in line clapped and kept clapping until we were all passed them.  That made me feel so proud and happy that we were making people aware of A-T.

randy bacon, 7 billion ones, ataxia telangiectasia

DESTINY:    This disease is a terrible, heart breaking thing to live with but because I have it I have met so many amazing people, such as Jeremy, and traveled to places I had never been. I actually look forward to the future now, so I guess if there is one thing I would want people to take away from reading my story it would be to get out there and live! If you see someone that is in a wheelchair or someone a little different from you, be kind. Go and say "Hi". We ALL are human and have feelings.

JEREMY:    Just stay happy, always smile, and never give up.  There is always something good to think about.