Patient Stories

Gavin Motzko

On Wednesday, April 13, 2011 in the 705 house dining room, you are invited to help celebrate Gavin Motzko’s heart transplant birthday.  Here’s his remarkable story…

In December 2009 when he was six months old Gavin Motzko was diagnosed with a rare and very serious genetic heart condition, dilated cardiomyopathy.  Gavin and his parents, Shannon and Sara, of Eden Prairie, MN came to Mayo Clinic in January 2010 for a transplant evaluation.  His surgeon and cardiologist advised them that without a heart transplant, Gavin probably wouldn’t make it to his 5th birthday.  There is no cure for cardiomyopathy and there was no way to predict how long his heart would last.  It was devastating news to the new parents.

“”When we were told he had to have a heart transplant to live…that was definitely the worst day of my life,” said Sara Motzko.

In February Gavin was put on the heart transplant list.  His surgeon gave an estimated wait time of approximately two months before a new heart might become available.  By April Gavin had gotten so sick he was admitted to St. Marys Hospital.  He was intubated and put on oxygen support.  Gavin’s heart was worn out and could no longer work on its own.  His kidneys were starting to fail and his lungs were working so poorly that one collapsed.  “We didn’t know if he’d make it through the night,” Sara said.  “They had medical staff working on him all night just to keep him alive.”  Doctors had to place Gavin on a special piece of equipment called a Left Ventricular Assist Device (LVAD) to do the work of his heart.  He was the first baby in the Midwest to be put on the LVAD system.  Doctors felt it would keep him alive for a few months while waiting for a donor heart.

The next day the Motzkos received their miracle.  “We were blessed with the news that a heart was available,” related Sara, “I was just in shock, and when we found out the heart was a match, I cried and cried and cried.”

On April 9th Gavin got his new heart.  “It was wonderful – he was literally night and day from pre transplant to post transplant,” added his Dad, Shannon.  

One month later Gavin was released from the hospital and came to stay at Gift of Life for follow-up care to ensure that his body did not reject the new heart.  Gavin immediately became the center of attention whenever he was in the dining room or another part of the house.  Staff, patients, and caregivers were all drawn to his smiling face and energetic personality.  “Whenever any of us heard his voice, even if he were fussing, it made you smile,” said Shelly Daane, one of the GOL volunteer tour guides.  Gavin’s presence was uplifting and heart warming for everyone, and watching his progress just made you feel good inside.  On June 9th Gavin celebrated his first birthday – and it was a celebration!  Not long after, the doctors gave Gavin’s parents the words they were hoping to hear – they could take Gavin home.  

According to Shannon, the difficult part is, in order for Gavin to live, another child had to die.  The Motzkos don’t know much about the donor, other than the child was one year old, the family was from somewhere on the East Coast, and they donated more than just a heart.  “That family donated kidneys, liver, and heart.  So they helped quite a few families…potentially saving 5 lives, including our son’s.”

Sara, Shannon and Gavin thank all of the Gift of Life family for their continued thoughts and prayers.  They feel very blessed to have had such wonderful people in their lives.  All of us here at Gift of Life look forward to seeing Gavin when he comes to visit.  He truly brightens our days!
-Shannon & Sara Motzko
 Parents of Gavin, heart transplant patient
 

Sandy Verbeck

My daughter, Sandy Verbeck, and I made our first trip to Rochester in 1987 when she officially became a heart patient here at the Mayo Clinic when she was 15 years old. We stayed at the Gift of Life Transplant House for the first time in 2000.  We walked past it many times throughout our visits to Rochester – to and from what were to become our favorite restaurants and shops.  When it was mentioned to us that we might consider staying there, we were skeptical.  In our minds, we expected this dorm-style housing for patients visiting the Mayo to be cold and depressing.  From the moment we set foot in Gift of Life, we were met with warmth and compassion.  Little did we know that the Gift of Life Transplant House would become so much more than a house at which to stay during our visits – eventually it would become our home, both literally and figuratively.  We moved into the 705 house to be the night managers in 2007, and then to the 724 house on its opening day in November, 2009.  We have had the gift and the pleasure of welcoming numerous patients from all over the world who have become friends.  My daughter cherished our home here, and intended to write a letter to express this love and gratitude but was unable to before her passing on February 1, 2011.  It is difficult for me to express the gratitude and love Sandy had for this community.  As I continue to make it my home, I can only hope to pass on the loving kindness that was shown to me and my daughter throughout the years.  

To all those who enter through the Gift of Life home, may they share the same experience that Sandra and I did until her very last day.
-Sharon Verbeck, caregiver