Quinn Rosalie Seymour was born virtually perfect. Her finger nails looked very worrisome, but nothing else stuck out. Until the nurses washed her at the hospital and peeled skin off her bottom as they dried her. Very quickly her skin began to break down. On day 9 of her life her parents were given the first verbal diagnosis that confirmed their fears – Quinn had Epidermolysis Bullosa and the doctors best guess was that it was the worst kind. After several punch biopsies it was confirmed on day 16 that Quinn was suffering from Junctional Epidermolysis Bullosa – Herlitz.
The only known treatment option toward a cure is a risky Bone Marrow Transplant. The only place in the world doing these transplants is the University of Minnesota. It is still a clinical trial. Quinn Seymour Quinn was approved to take part – she was the 19th to be transplanted and by far the youngest. Her family moved with her from Ohio to Minnesota and one parent lived in the hospital with her 24 hours a day, 7 days a week. While the other tried to spend time with their 2 year old son. Quinn was on narcotics from day 10 of her life.
She had to suffer through grueling bathing and bandage changes that lasted from 2.5 hours to 5 hours. She was covered in bandages from her toes to her neck and later over most of her head. The skin blisters initially, but is so fragile that it becomes open wounds. These wounds are compared to second and third degree burns. In 2012, with little or no immune system, Quinn struggled for her life through 3 bouts of pneumonia – all of which are very deadly to infants and transplant patients. When she finally passed on April 7th – it was discovered she had 2 more types of pneumonia in her lungs that had not previously been diagnosed.
As the first step in helping families during a major crisis the Seymour’s are raising money to build a chapel inside University of Minnesota Children's Hospital at the University of Minnesota (where Quinn lived). This hospital is doing cutting edge research for those that suffer with EB. It is the families hope that the chapel will provide some comfort to patients, families and friends. EB may be “the worst disease you have never heard of,” but rest assured the Seymour’s believe all illness – especially childhood illness – is awful. If even a small glimmer of hope can be given to someone struggling with a childhood illness, then the chapel project will have been a success!
Pray, hope & don’t worry ~St. Padre Pio
Epidermolysis Bullosa is often called "the worst disease you have never heard of." That is definitely an accurate way to describe this awful disorder. The way we prefer to think of it involves butterflies. It is said those with EB have "skin as fragile as butterfly wings." Quinn very quickly became our butterfly. During her sweet life we were surrounded by love, support and prayer. As we both read the daily emails, caring bridge guest book comments, letters, prayer cards and texts, we felt so loved.
We felt so in touch with an army of prayer warriors that were helping us to get Quinn her cure! Mandy and Marc began to talk about the amazing people around them as Quinn's Butterfly Army. One day, Marc shared that through the blog and it stuck. Quinn's Butterfly Army took on a life of its very own and we are forever blessed by the continued outpouring of love and support!
Why a chapel? When we were facing the suffering and death of our child, to pray was all we could do. What a blessing it would have been to have a place of respite to escape to where we could quiet our minds & souls, to pray to our loving God, to restore our hope. Our prayer now is that The Quinn Seymour Chapel will provide that for families who are taking the journey we once traveled.
Help us build a chapel for the patients and families at the University of Minnesota Children’s Hospital in loving memory of Quinn!
As you may know, we were presented with an incredible opportunity to honor our Quinny while we were living in Minnesota. A chaplain came into Quinn’s hospital room to apologize that there was no Catholic Mass in the hospital and unknowingly planted a seed. He told us about the space in the hospital, just off of the lobby, that is meant to be a multidenominational chapel in the newly constructed hospital. At that very moment, we knew that one day we’d like to honor our daughter by helping to raise the funds for The Quinn Seymour Chapel. As you can imagine, the passion for this project took on new meaning when Quinn went to heaven on April 7, 2012.
While we were living in Minnesota, we met so many amazing families from around the world, with many different faiths and beliefs. All of us had one striking commonality; we were all enduring suffering and sadness we never expected would be a part of our lives. And all of us needed something bigger than ourselves and our circumstances to believe in. We hope that The Quinn Seymour Chapel will give this to the families who continue to helplessly watch their children struggle. But we cannot do this without the community that so lovingly supported us while we were in those families’ shoes.
We have committed to raise $500,000 for the construction and maintenance of Quinn’s Chapel. As we write this letter, we’ve already raised nearly $240,000! That is amazing. And the clock is ticking. We have until June of 2015 to have all of the money committed. Will you consider helping us make Quinn’s legacy a reality? You can do this in a number of ways...
2. Make a pledge. By completing this pledge form, you are able to make a commitment to donate any amount over as many as five years.
3. By sharing Quinn’s story and our hope to build The Quinn Seymour Chapel in her honor. Spreading awareness and helping us to raise the funds by fundraising, Tweeting, Facebook, and email.
4. And of course, by keeping us and this endeavor in your prayers!
All donations are tax deductible.
Many companies are willing to match charitable contributions made by their employees.
Plus, many businesses charitable contributions are matched by the United Way.
Please check with your employer to find out if they are one of these generous companies!
We are so unspeakably grateful for any donation you are able to make in order to help us build Quinn’s Chapel! The hospital has a special recognition program set up for $10,000 and $100,000 donations.
Donors making a $10,000 contribution will be recognized on the plaque outside of The Quinn Seymour Chapel.
Also donors contributing $100,000 or more will be recognized by name on the plaque outside of the chapel and in the hospital lobby.
Thank you for taking the time to prayerfully consider helping us make The Quinn Seymour Chapel a reality!
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