Reflections from the 22q Awareness Ambassador
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December 4th, 2015
To the 22q community,
With 2015 rapidly coming to an end, can you believe it? Where has the year gone? Also means my internship is coming to an end. I just wanted to take the time to express on how much of an impact this internship has had on my life, what I plan to do after, and of course a few thank you’s to those who helped make my dream become a reality!
Come join me on this journey as I to take a trip down memory lane and see where my journey as the Dempster Family Foundation's 2015 Awareness Ambassador began...
Let me start by briefly explaining how I got diagnosed with 22q as it ties into the story. I had several health issues as a kid growing up like turning blue in my face (which gradually fixed itself), and ear issues. It wasn’t until after my third grand mal seizure at fifteen years old that a doctor on staff in the emergency room suggested I get the fish test done (study of the chromosomes) to see if I would by chance have 22q. He proceeded to tell us that it was uncommon to be diagnosed this late in life but based on my medical history it was worth checking into. The results came back positive, so at fifteen years old I was diagnosed with 22q. That was 11 years ago.
When I was diagnosed 22q was barely on the “map”. My family and I had never heard of 22q (short for 22q11.2 Deletion Syndrome) and we knew not a single person who had either. Imagine what it's like for a family to absorb the fact that one of their own has a mystery syndrome... a "rare" condition. I know many of you know exactly what kind of fear and loneliness this can cause. Fortunately God had graciously blessed us with amazing family and friends who are still to this day supporting us in any way they can, and we will be forever grateful for that. Where 22q was concerned we were alone and we knew it. It was 6 years before my 22q journey became one brimming with support from hundreds of people from around the world who do indeed know what 22q is and are acutely aware of the unique challenges, the unknowns and the fears.
Let’s jump a few years ahead to the summer of 2012 my mom and I were attending our first 22q conference in Orlando,FL . Side note: I’m a competitive baton twirler and baton twirling coach, and that same weekend a National Baton Twirling competition was being held up in Ohio. I chose the conference and it honestly hands down was the best decision I have ever made. The families we connected with became our extended family over that three day weekend. It was life changing, the mass majority of the families had children much younger than myself. I've come to know those kids as incredible warriors... 22q warriors to be exact. Our family grew beyond our wildest imagination.
Throughout the weekend I kept hearing from several people how important it was for me to meet the amazing Michelle Breedlove Sells. My mom and I were finally able to make our way out to Michelle and the 22Q Mystery Tour Bus bus were, went to introduce myself and she already knew who I was. I remember her enthusiasm, energy, and kind heart. Watching her do what she does and love doing it was captivating. On the car ride back home I remember saying to my mom “If I could do what Michelle does I would do it in a heartbeat.” Did you know it only takes a few minutes for someone to impact your life? At the time little did I know how much Michelle had truly impacted me during the brief time we had together.
As your Awareness Ambassador my primary focus was to spread awareness through social media and make sure that any posts from the Dempster Family Foundation were posted the support groups. I was also blessed with the opportunity to travel with the foundation on the 22q Mystery Tour Bus to Pittsburg, Pennsylvania where I had the opportunity to experience the 22Quties Special Needs Beauty Pageant as a judge. I traveled to Columbus, OH to attend the Healthy You and 22q conference at the Nationwide Children’s Hospital. As a result my 22q family expanded once again. I am continuously blessed with opportunities to come in contact with 22q families in person and online. If I have not yet had the pleasure of meeting you, I hope please know that I hope to one day.
The other day I was given a map of the United States and I decided to put it up on my wall in my room, I sat down and thought of all the places I traveled to so far and it’s pretty incredible that the majority of the places I’ve traveled too are related to 22q. Who would have thought that something that could have easily meant to be designed to “hold me back in life” God would use to propelled me forward with purpose, hope and inspiration. Meeting these 22q warriors in person watching them with smiles on their faces, joy and love in their heart, leading “normal” lives all while beating the odds. If you have a conversation with these 22q bundles of inspiration ask them what they want to do when they get grow up! They have such big dreams and bright future’s a head of them. I truly believe in my heart that you can do anything you set your mind too and I make a point to drive that message home when I'm in the company of my 22q family!
This internship has given me so many tools to carry into the future. It has taught me how to use my time wisely, it’s taught me to be flexible....that even if you have the best laid plans sometimes you have to change on a dime (that’s just how life is) and that's okay! Life is like 22q, or a box of chocolates... you never know what you're going to get. But rolling with the punches and making lemonade from lemons can be life's greatest gift to yourself and those around you.
This internship has taken me out of my comfort zone; believe it or not just five years ago I was terrified to fly and would not get on a plane but I got over that fear really quick. People always tell me that I’m such a great leader but I struggle to believe that myself some days. This position has opened my eyes to realize that I am the leader everyone says I am. I am eternally grateful for all of the encouragement I have received and for the opportunities and life lessons that this internship has afforded me.
I have and will continue to learn how to better use my VOICE on behalf of the 22q community! Long before this internship I was educating, connecting, and spreading awareness every chance I could about 22q and long after this internship comes to an end I continue to do so only with a bit more confidence and determination than before. I strive everyday to tell at least one person about 22q, KNOWLEDGE IS HOPE! Will you join me in this daily exercise? I certainly hope to inspire a few to follow my lead. I've learned that no one organization or person will successfully drive public awareness of 22q disorders.
I have a challenge for you: If you have already embraced this challenge I encourage you to up the challenge and educate at least two to three people on 22q a day if you can :) You would be surprised how many people actually do know about 22q but they know it as DiGeorge Syndrome, and probably haven’t done research about what it is. For some reason, it appears more interesting when they know families affected by the condition. I think it makes it more real...anyone else get that feeling too?
Ryan Dempster – I thank you for creating such a strong foundation where we could lead people to learn more about this, as well as connecting families from all over the world. I thank you for allowing me to play such an important role as the Awareness Ambassador 2015, it’s something that I will never forget. Thank you and your family for your time and dedication we appreciate it and you more than you know!
Parents- I thank you from the bottom of my heart for allowing me to be a part of your children’s lives. People ask me what one of my favorite parts about meeting these warriors? I respond with; my favorite part is meeting these warriors and their family, they are so strong, they are inspirations... hero’s! They are running around with smiles on their faces, leading “normal” lives despite their health challenges. They are beating the odds every single day, and are OVERCOMERS!! Parent’s I look at you guys with such admiration, and I see my own parents in you. When I look into her eyes, your eyes I see a little bit of fear, doubt, and anxiety but I have to say what stands out most in all is your faith, your hope, your courage, strength and most of all your deep unshakable love! I can’t even begin to imagine what you face on a daily basis physically and emotionally even with my own mom I can’t imagine how hard it is. You guys are the real hero’s. I am so blessed and thankful that I get to watch your little one’s grow up in to strong and courageous young adults.
To all of my amazing family and friends- I honestly can’t thank you enough, thank you for always believing in me even when at times I don’t believe in myself. Thank you for always giving me the courage, hope, strength, and faith I needed to continue to see the light at the end of the dark tunnel. For always keeping a smile on my face, and for always being there, and fighting these challenges with me. You guys are truly amazing thank you for constantly reminding me “I can do all things through Christ who strengthens me.” Philippians 4:13
Michelle Breedlove Sells- Thank you for making one of my dreams become a reality! This past year has been nothing short of AMAZING and YOU made this all possible. I’d say we make a pretty awesome team just saying :) Sorry to say it but you’re stuck with me now! Especially since people think we do look like sisters! Your love for our 22q family is so encouraging and gives so many of us hope! You are forever a member of our 22q family no matter what! We love you and appreciate you so much! Since day one you knew that motivational speaking was always a dream of mine, you have given me the courage to pursue this dream further and have helped to provide opportunities to live out my dream. You encouraged and helped me to memorize my story instead of reading it. Now when I share my story I do my best to look into the eyes of my audience instead of looking down at the paper. I thank you for the way that you have impacted my life, for believing in me, and for helping me take my dream as a motivational speaker to the next level. I promise to make you proud everyday!! So grateful God crossed our paths and that we will continue to be by each others sides. You are truly an amazing person, thank you for all you do and continue to do! Love you big sis!
In closing: Dear 22q family, just because the DFF is closing doesn’t mean that it’s the end of our 22q family. The torch that has been shining bright for years has just been passed on, the world will continue to know what 22q is because I will continue to educate people about it! Will you join me? As my friend Michelle said to me recently... “you don’t need a title to inspire people.”
For those who have yet to attend a 22q conference, I highly recommend and encourage you to do so. Even if it's just one time, you won’t regret it! You get educated by doctors from around the world, you meet incredible families, hear speakers and build lifelong friendships and if your like me you get inspired to be a part of the change you want to see.
2015 Awareness Ambassador, The Dempster Family Foundation