Thursday
Jul162009

The Funny Thing About Time - Posted on KDQN.NET on 7/10/09

LOOKING BACK AFTER 25 YEARS 07/10/09

The following article was submitted by Troy Cupps, a 1984 graduate of De Queen High School who recently visited De Queen with his family for his 25th year Class reunion.

The Funny Thing About Time by Troy Cupps

 "High school reunions are like time transporters, I think. They sweep us back into our past where we relive the friendships of our youth, improbable crushes and endless summer days. They trigger memories long forgotten of old acquaintances that scattered with the wind once the last bell rang. More than anything, high school reunions help us make sense of the direction are lives have taken—of who we’ve become as adults.

It’s fitting that my 25th De Queen High School reunion would find me so circumspect. After all, this marked my first time to catch up with old buddies, find out who had remarried and who had unexpectedly passed away. But this reunion held a far greater significance to me. This was the year my youngest son was diagnosed with a rare medical condition most people have never heard of. Without a cure, his life expectancy will be cut painfully short. He may not live to attend high school much less enjoy a reunion. Time is not his friend.

My wife Michelle and I are extremely blessed to have found each other. We own a small business in Tulsa, where we are raising three beautiful sons and a daughter. We have a busy, hectic life like most people and wouldn’t trade a day of it. When we learned in February that our four year old son, Mitchell, was suffering from Schimke Immunooseous Dysplasia, one of the rarest forms of dwarfism, we were devastated. Our world is going to look a lot different from this moment forward, I told myself.

And I wasn’t wrong.

Since Mitchell’s diagnosis, our family has launched a crusade of sorts. We simply cannot watch our little boy continue to suffer from the debilitating symptoms of Schimke, such as kidney failure, high blood pressure, and migraines so severe they paralyze one side of his tiny body.

Unlike most dwarfs you might have seen, Mitchell is perfectly proportioned but stands only 27 and a half inches tall. He now weighs 18 pounds. His greatest passion is Taekwondo and let me tell you he is a fighter in every sense of the word. To our joy and astonishment, he recently broke through his second board. Yes, Mitchell is one giant of a kid.

After hundreds of hours and long sleepless nights educating ourselves about Schimke, we were fortunate to discover a research geneticist in Vancouver who believes a drug called Ataluren may be the cure we and other parents of Schimke kids have been waiting for. My wife and I quickly realized that our fight wasn’t limited to just our son; that there may be hundreds of parents around the world with a Schimke child who has been misdiagnosed—a fact we’ve learned is extremely common.

I guess you could say we’ve made our battle even bigger, but that’s alright. With time and money, Schimke is curable. We just don’t have enough of either right now. What’s the old saying, when one door closes another one opens? Yes, I think that’s so. We’ve taken our crusade public by forming the Little Giants Foundation. We created a fan page on Facebook and emailed hundreds of family, friends and business associates to spread the word about our efforts. We tell anyone who will listen about our son, our mission, and our relentless determination to save Mitchell’s life.

As we drove into De Queen the Friday before the reunion, I was excited to revisit the old placesand faces that shaped the man I am today. The old time transporter returned me to my past where my mother and father, Sam and Mary Cupps, and sister, Laura, lived on Maple Street. Where I threw newspapers after school and mowed lawns on the weekends. Where my family lived right next door to Ray Kimball, a long ago owner of the DeQueen Bee who expected his paper early if not on time every afternoon.

Where I never could’ve imagined how life would look a few decades later. Time is a funny thing, isn’t it? You can’t touch it, hurry it or stop it but you can almost witness the minutes tick by in the eyes of someone you love. I see it every day when I look at my youngest son and I saw it this past weekend at my 25th high school reunion.

 

You may send Troy an email at: Troy@LittleGiantsFoundation.org

Tuesday
Jun162009

Dad's Journal

Our journey through life with Mitchell has been a growing experience for Michelle and I. We are great supporters of each other, both leaning on each other’s strengths to get through each phase of Schimke.

Even dealing with something so tough as Mitchell’s dysplasia, his illnesses, his hospital stays, his surgeries, his size, I still see the gift in him. Our family is so blessed to witness such a miracle from God. Mitchell is truly a walking miracle.... How can he be so small? I can’t comprehend it...and I am his father. A miracle is the only way to describe my son.

Mitchell is like Simon Birch. If you haven’t seen the movie, go rent it today. God put Mitchell on this earth for a reason, and I believe that reason is to touch people in a way they may not have been touched before, to prove that miracles are here today, that God is with us every step of the way, and we should trust Him and what he has in store for Mitchell and our family. I hope you see the miracle I do and you see God working through Mitchell to help others.

I wrote my journal to tell you the role I play in this life journey. In my soul searching, writing and re-writing for over a month, I find that I am an optimist, a jokester, both sad and thankful for this journey.

I am our family optimist....and an optimist for many reasons. I know the true facts about Schimke and the bad things that happen to those diagnosed with it. I know the symptoms—low immune system, kidney failure, high blood pressure, migraine, and the constant risk of a stroke. I know these are all real and likely scenarios, but I must also be our family’s cheerleader. I know that things aren’t going to be rosy, but we can deal with the issues as they come. We should focus on the good and not worry about the bad things, those likely scenarios, which could happen in the future.

I am our family jokester. If I don’t laugh, I will cry. I am normally the first one to crack a joke related to Mitchell’s small size. “Mitchell, don’t drink too much of that or it will stunt your growth.” I’m always thinking of ways he’ll be able to fool people when he gets older. He looks like an infant, so he’ll be able to hide in great places at Wal-Mart. He’s already the best hider in the house when it comes to hide-n-seek. Wow. Now wouldn’t that be a great advantage to have? He’s also the only person we allow to walk on the table or the counter tops. And he will have a lifetime of piggyback rides because he will never be too heavy.

I am sad. Sad for him. Don’t tell anyone though as I keep this to myself. I guess that’s what we do as parents. We want them to have a perfect life, with no heartache, no skinned knees, no hurt feelings. I am sad that he must go through the pain of the migraines. To see his lifeless body, the confusion when he is in pain and can’t communicate, and the vomiting over and over again for hours is so tough. I am sad that even the smallest size underwear doesn’t fit him. I am sad he can’t truly play sports like his siblings and friends do like soccer, Taekwondo sparring, baseball and football. I am sad that when he stands in a swimming pool that a big splash or wave can knock him over because his 17 pounds just can’t hold him still (same for a hard wind). I am sad that he must constantly look up. I am sad he may never have a true girlfriend. I am sad to know the pain and suffering life is going to deal him through kidney failure, transplant, needle stick after needle stick, and the many doctor visits. I hurt for him and pray for his peace through all of this.

But I am thankful. I am thankful for the support of our church, our family, our school friends, our Taekwondo friends, our Sunday school class, our co-workers, our clients, our family. I am also thankful for you. I am thankful for the thousands of daily prayers said for Mitchell. I am thankful to those that have helped get the Little Giants Foundation up and running. I am most thankful for the hundreds of doctors who have seen or cared for Mitchell since he was born. I am especially thankful and humbled by Dr. Christy Mayfield, Mitchell’s primary care doctor in Tulsa. She is incredible. She never gave up looking for the cause for his symptoms or a cure. She has played the role of doctor, counselor, advocate, medical terminology interpreter, and researcher with countless hours of unpaid time spent researching a potential diagnosis for Mitchell. She is truly a priceless individual and I am thankful for her. The same goes for Dr Michael Bober of the Alfred DuPont Children’s Hospital in Wilmington, Delaware. I am thankful for his dedicated research, late night phone calls and hours of conversation with us and others to try and diagnosis Mitchell. Dr. Bober matched Mitchell to Schimke and is an outstanding doctor to the Little People community.

My heart also goes out to Dr. Cornelius Boerkoel in British Columbia and Dr. Thomas Lucke in Germany, who have spent hours on the phone with us, directing Mitchell’s care from different parts of the world—all for no pay but for the passion of one little boy. Without their research related to Schimke, we would not have a diagnosis, path to follow, or a set of expectations of what is to come and what we need to prepare for. These two doctors and those listed on the SIOD Research page are continuing their research to find a cure for Schimke and other forms of rare dwarfisms, as well as other important medical research. And finally, I am thankful for you. I am thankful that you have taken the time to come to the Little Giants Website, to look at the different pages and to read about the Little Giants Foundation, SIOD, our journey, and Mitchell.

As I close, I ask for your prayers and help. I ask that you please forward the Little Giants Foundation Website link to others, post it on Facebook and other social media sites so that others can share the experience, learn about Schimke, see the miracle in Mitchell, and have an opportunity to support this great cause and possibly help save my sons life.

You may send Troy an email at: Troy@LittleGiantsFoundation.org