For many, Cystic Fibrosis is an “invisible illness”: On the outside, they may look perfectly healthy, but what’s happening on the inside, or behind closed doors, is a different story. That was the case for Mike, until it wasn’t. He grew up like any hyperactive boy of the ‘90s and ‘00s, playing hockey and football, skateboarding, making “Jackass”-style prank videos with his friends. Even when the life expectancy of CF patients was bleak, he never let that keep him from dreaming. He had a singular vision for what he would do when he grew up — he wanted to be creative, to tell stories through photos and videos.
Mike has always had a deep passion and curiosity for life, which is one of the things I love most about him. But in the spring of 2018, that drive slowed to a near-complete stop, and his invisible illness suddenly became very visible. He could barely walk around the block with our dog, he couldn’t sleep, and he had to carry an O2 tank with him wherever he went. His lifelong battle with Cystic Fibrosis had reached the point of no return, and his doctors said the words we hoped we’d never have to hear: a bilateral lung transplant was our final option.
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Mike’s call came on the evening of Sunday, May 13, 2018 — Mother’s Day. For Mike’s mother, Cindy, this Mother’s Day gift was slightly better than macaroni art or breakfast in bed — her first baby was getting his life back. But as one mother was celebrating a second chance, another mother was out there somewhere, grieving. It’s something we can never lose sight of.
In my (totally unbiased) opinion, Mike should be the poster boy for transplant recipients at the hospital in St. Louis where he had his surgery. He was, and is, a model patient. He understands the gravity of what he’s been given and he refuses to waste a single second. We are both living to make his donor and their family proud. To be worthy of this ultimate gift.
We’ve been together now for over 12 years, but it was only after his recovery that I felt like I got to meet Mike for the first time. Post-transplant Mike — the fullest, truest Mike — is so joyful. He’s a serial hobbyist. He’s got a wicked sweet tooth. A dry sense of humor. An adventurous spirit. An infectious giggle. He’s goofy and loyal and, and, and. He, and our family, is thriving in every sense of the word.
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With the success of Mike’s transplant, CF can never plague his lungs again. But, CF is still present in his pancreas and digestive system. It affects his Vas Deferens, causing Azoospermia, essentially meaning he was born with a vasectomy. It’s a lifelong illness he will always need to manage, with CF meds and now with transplant meds. And the harsh reality is that these lungs are borrowed. They are a perfect match — that will last a long, long time — but not forever.
And try as we might, after five years of in-vitro fertilization (IVF), including nine med cycles, seven egg retrievals and five embryo transfers, we’ve been unsuccessful at having our own biological children. So, we’ve decided to move on to donor eggs. Another selfless person will be the one to make our family complete.
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After every disappointment, it’s been tempting to ask, “Why us?” But every time those thoughts creep in, I try to remember these three important things:
1. Our family is proof that there’s beauty in brokenness.
2. We are living, breathing examples of the kindness of strangers.
3. It’s okay to ask for help.
These are lessons I want to teach our someday children; children who very literally wouldn’t be here if not for our lung donor, our egg donor and those who are helping ease the financial burden of copays, deductibles, meds, procedures and hospital stays.
Our story has been one wild ride on the world’s most rickety wooden rollercoaster, yet we still keeping rolling. And you know what? I wouldn’t trade it. Because very few people have witnessed such generosity up close, let alone been on the receiving end. We owe everything to people we’ve never met. And we’ll never, ever take it for granted.
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Family and friends of Amanda and Mike Burch are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.
Mike and Amanda have chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
