If you are a parent, then you know exactly what it means to have unconditional love. From the moment you know about your child’s existence your heart is on fire with excitement and love. We dream about the amazing lives our children will have and the joy and wonder they will remind us exists.
My story is no different. My wife – Mandy – and I were blessed with an amazing little boy and found out our second child would arrive a few short months after our son turned two. Four weeks before our due date we were settling in. No more trips, time to start getting the house ready and definitely time to pack the hospital bag. And then Quinn was born. Four weeks early, in a mad rush of adrenaline and excitement our beautiful baby girl was born inside our house, luckily with the help of our new friends – the fire department! In those first few moments I had the most unbelievable day dream. I pictured my beautiful daughter at my side as I prepared to walk her down the aisle. My heart was bursting with JOY!
In the hours and days to come we learned that my dream would likely never happen. While Quinn looked perfect at birth, something was definitely not right. Her skin was developing huge, fluid filled blisters all around her diaper and on her legs. Her finger nails were popping off nearly whole. We were terrified. Not only did we have no idea what was wrong, but our daughter was in pain. She could not tell us how much, but as a parent you know. We held her almost non-stop. You sign up for sleep deprivation when you have kids, but you hope for a whole lot more than we were getting. The worst part is the first two dermatologists we met had no idea what they were looking at. Lucky for us the third dermatologist knew what he was looking at. Unlucky for us and Quinn, he told us it was Junctional Epidermolysis Bullosa. Further testing would confirm that Quinn had Junctional Epidermolysis Bullosa (JEB) – Herlitz variant. Several frantic days in front of the computer left me in utter disbelief. I saw some of the most gut-wrenching pictures I had ever seen. And, I learned that JEB-Herlitz claims life – generally before a child celebrates their first birthday. I learned the blisters we could see only told part of the story. Anything with a mucous membrane internally from the nose down to the bottom can be equally as horrific.
We found reason for hope in a clinical trial being done in Minnesota. It was aimed at fixing the genetic defect that we had passed on unknowingly to Quinn. It was offering a Hope at a life with less pain and less bandages, it was offering a Hope at life. The clinical trial involves a bone marrow transplant and it was working for Quinn. Unfortunately, bone marrow transplant and life with EB are both incredibly difficult and Quinn fought so hard. Quinn was given her ultimate cure on April 7, 2012 when she went to heaven.
There are so many painful details that I cannot wipe from my memory. And we have been asked, “Do you wish this never happened?” It’s a simple answer – NO! Yes, I wish Quinn had been born perfect and yes, I wish she was the beautiful three-year old she should be. But, no, I would not give back her life for anything. Her life gave Mandy and I a beautiful gift. It allowed us to see the true LOVE that does exist in our world. We live in Ohio, so you can imagine how scary it is to learn you need to move your whole family to Minnesota to get care for your child. Move away from your support system and put your hope in strangers. If you are a parent, you understand our decision – there really was not a decision to be made; we were going. I could type for days about the amazing things that happened for us and Quinn during her too short life and those that continue today.
I started a blog to give updates to our family and friends. At the end of the first week we have 500 people registered. Shortly their after it grew to almost 10,000! We received love and en-couragement from all over the world. It was one way that we were now seeing unconditional love returned to us.
We had love shown to us in big ways. Benefit dinners that were held for us by friends, family, and our parish community to allow us to not worry about any bills while we cared for Quinn – least wise the concern we had for how we would cover the $10,000 per month bandage charges if our insurance decided not to cover it. These big events were such a blessing to us. They truly allowed us to care for Quinn and ourselves and have no other worries.
It would not be right to say one type of love gesture meant more to us than any other, they were just different. And some of the smallest still stick with us today. Here is one that took me so off guard, I will remember it forever. Quinn stayed in a room on the bone marrow transplant unit (BMT) as her primary room. However, she spent more time than we would have liked on the Pediatric Intensive Care Unit (PICU). These units were like two completely different worlds. All new staff and all new procedures…and definitely new concerns. One morning it was relatively quiet in the PICU when someone knocked at our door. In walked the sweet woman who cleaned our BMT room most days. She had not seen us for a few days and she was worried about how Quinn was doing. Never mind that she was from Ethiopia and we struggled to understand her as much as she struggled to understand us! She loved Quinn and she was worried about her. My heart was so full of love.
Love was shown to us every day at the Ronald McDonald House we lived in. They truly are the Houses that LOVE built. It was the staff we saw all the time and the volunteers that showed up week after week to keep the house running smoothly. It was the countless meals they served to help us focus all of our attention on our children. It was the one volunteer – Pat. He showed up every Wednesday and did little jobs around the house before dinner. Then he blew up the bouncy house down in the gymnasium so all the little kids could bounce and play. We loved “bouncy house Wednesday!” It was a night we would try to have someone else stay with Quinn for an hour so that Mandy and I could eat dinner with our son and watch him bounce. It was a night we knew Pat would stay after all the big kids left to let the three of us bounce together. Those were some of the only nights we truly smiled. We giggled and grinned as we played like kids….those 30 minutes were life changing! NO – we do not wish that Quinn’s life had never happened. Quinn’s life showed us that true LOVE does exist in our world. And Quinn’s life continues to challenge us today with a big question – what love are we giving back to the world?
Mandy and I were blessed with an amazing support system and a strong faith to lean on. Unfortunately, we saw so many others that were not given those gifts. They struggled mightily to keep going, to recognize the hope. To help with these families we have spearheaded the fundraising efforts to build the Quinn Seymour Chapel. This will be a space inside the hospital that Quinn lived in – the University of Minnesota Masonic Children’s Hospital. This hospital is state of the art and new, having been opened in the spring of 2011. With the hospital’s support, we are over 50% of the way to the goal of $500,000. I may never get to walk Quinn down the aisle, but she sure has set our hearts on fire to make sure so many others can find the joy and hope that comes from standing at the back of a chapel! If you are interested in learning more or donating, please visit www.quinnscrusade.org.
Marc and Mandy Seymour are Catholic parents living the busy lives that parents live. Marc is a 401k wholesaler and Mandy is a practicing school psychologist. They work for a living and use their free time to try and repay the love the world showed to them through the fundraising to build the Quinn Seymour Chapel. The hospital wants this chapel to be built, they truly just need the donors to come forward – which is where we have stepped in to raise the money!
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