I couldn’t help but notice the hashtag on Mary’s previous blog posts: #findyourstrength. It used to be that I’d read something like that and immediately associate it with physical strength. Did I get my strength-training workouts in this week? Am I running enough? Am I getting enough cardio? What can I do to get stronger? Faster? Better? Healthier? For most of my life, these questions came to mind when assessing my own health, fitness, and willpower.
Though my health and physical strength have always been, and will likely always be, a top priority in my life, #findyourstrength has an entirely new meaning to me these days. Instead of wondering what workout I can do to get stronger, I wake up each day digging deep for enough strength just to make it through the day without my little boy here on earth. That is a whole new kind of strength — one that seems impossible to comprehend by outsiders looking in. It’s emotional, mental, and spiritual.
B.STRONG…Bryce Strong. The strongest person I’ve ever known, my first child and little angel, Bryce, taught me and so many others what it truly means to #bstrong. He redefined the concept for many of us as he fought a rare genetic disease known as KrabbeLeukodystrophy— a fatal, neurodegenerative brain disease that robbed him — and my husband and I — of so much. I want to share our little superhero’s story with you in hopes of raising awareness of this devastating disease.
Bryce was born in May of 2013 and appeared perfectly healthy until around 5 ½ months of age. He was such a happy, smiley baby, and was meeting all his milestones. Life seemed perfect. Toward the end of October, however, he started to regress. His neck was weaker and he wasn’t using his arms like he had been. We took him to his pediatrician immediately and were eventually sent on for further testing throughout the next month.
In November, we received the worst news that any parent could receive. Our perfect little boy would be robbed of life by this horrific disease, and it would happen very quickly. Doctors told us he would continue to regress and lose everything: his ability to smile, laugh, eat, swallow, move, see, hear, and eventually his ability to breathe. He would never sit, stand, walk or talk.
But what they told us next was even more devastating: It didn’t have to be this way for Bryce. Had he been screened at birth for this disease, he could have received a potentially life-saving cord blood or stem cell transplant prior to the onset of symptoms. For Bryce, it was too late and we were told there was nothing we could do but cherish every fleeting moment with him and make the very most of his precious and much-too-short life.
Our world was completely flipped upside down. There are no words to describe what it was like to watch your child lose everything — each day came with a new form of grief. But they came with a unique form of joy too. We took in every second we had with Bryce. We spent hours comforting him, cuddling him, memorizing his every feature. We were able to be home with him for the duration of his illness, and I wouldn’t trade that for the world.
After a yearlong battle with Krabbe, we lost our sweet boy on November 26, 2014, at just 18 months old. Life will never be the same.
Strength took on a whole new meaning in my family’s life. Bryce inspired us every single day as he bravely fought for his life. He experienced pain and suffering that could have been avoided if the state of Wisconsin included leukodystrophies on its newborn screening panel (only a handful of states currently include them, but many more are now working to get them added). A tiny sample of blood from a heel prick at birth could have detected this disorder and given Bryce a fighting chance at life. He deserved that and so do all babies born with this and other rare diseases. We will continue to fight and raise awareness until Wisconsin tests for Krabbe and other rare diseases.
“YOU’LL NEVER KNOW HOW STRONG YOU ARE UNTIL BEING STRONG IS THE ONLY CHOICE YOU HAVE.” As I watch other families lose their children to this and other horrible diseases, the strength I see is not intentional. It’s necessary, it’s innate. We don’t try to be strong; we have to be strong. We have no other choice. Bryce taught us to take nothing for granted. Each day, we find enough strength to smile for him because he couldn’t. We laugh, walk, run, eat ice cream, and do everything he couldn’t because we know that at any moment it could all be taken away. And when we struggle to find enough strength because of our aching hearts, we think of all amazing things that family, friends, coworkers, our communities, and complete strangers have done for him and our family. We look at all the good that has come from this tragedy. Bryce’s strength continues to live on in us and in many others.
In a little over a week (on July 19th), two of our amazing and supportive friends, Missy Sperle and Joe Krantz, are competing in the extremely challenging Ironman 70.3 race in Racine, Wisconsin. They are not only completing this challenge for themselves, but for our sweet little Bryce, too. He has been, and will continue to be their inspiration to #bstrong, and keep going when it gets tough and the task seems impossible. There is no doubt this race will test their strength — physically, mentally, and emotionally. I’m certain they will be telling themselves along the way that they can and will get through it. And they will, just as we have and continue to do each day without our precious boy. I know Bryce will be with them every step of the way and there is no doubt in my mind that they will find the strength to accomplish this in his memory.
Thank you, Missy and Joe, for continually showing us your love and support. What you are doing means so much to our family. I’d also like to thank Mary @Hersuppz.com for sponsoring them in their B.Strong 70.3 journey and for asking me to share our story of love and strength as we continue to raise awareness of Krabbe Disease.
Throughout the year that Bryce fought Krabbe, my sister and I kept family and friends updated on his health with journal entries. You can read all the entries at http://www.caringbridge.org/visit/brycethomasheckendorf/journal and additional information regarding Krabbe disease at http://thebstrongfund.org
To donate for further research of Krabbe or to purchase a supplemental newborn screening kit that screens for this disease and many others, please visit www.huntershope.org