By Julie Krienke
HENNEPIN COUNTY Discouragement, desolation, apprehension and fear are just a few of the emotions that the Motzko family felt as they waited for a heart transplant for six-month-old Gavin.
“I think everyone settled in and realized that we could be waiting years for this heart,” Noelle Taylor, a family member and close friend, said. “Then he got sick, and it was like a rollercoaster.”
“It really has just turned everything upside down,” Noelle said. “I thought, ‘How is this going to work out for the best?’”
A discouraging start
Diagnosed with Dilated Cardiomyopathy in December 2009, at just six months of age, Gavin Joseph Motzko has endured more hardship in one year than many will encounter in an entire lifetime.
According to Gavin’s website, Dilated Cardiomyopathy is an extremely rare and serious heart condition. Only about six out of every one million children are diagnosed with this condition. What’s more, there is no cure.
Shannon and Sara Mages Motzko of Eden Prairie proudly received their bundle of joy June 9, 2009. Little did they know, six months later they would be waiting for a heart transplant for their only child.
Although Shannon and Sara currently reside in Eden Prairie, family members live in the Delano area.
Grandparents of Gavin are Ronald and Diane Mages and Sheila Swartzer. Great grandparents are Earl and Gladys Taylor and Albin and Adella Mages.
“There’s a lot of emotions that go along with it,” Noelle said. “When you looked at Gavin, you didn’t know he was sick.”
Gavin was taken to Mayo Clinic in Rochester in January 2010 for a transplant evaluation. Family and friends then received the most heartbreaking news of all.
The surgeon and cardiologist at Mayo Clinic discovered that, without a transplant, Gavin would not make it to the age of five.
In February 2010, Gavin was placed on a heart transplant list. Doctors estimated a two-month wait for a heart to arrive for Gavin.
No one knew for sure how long Gavin’s heart would last. His condition continued to worsen until a cardiologist admitted him to St. Mary’s Hospital in Rochester April 5, 2010.
Two days later, Gavin was placed on oxygen support, as his heart would no longer work alone. His kidneys were failing, and his left lung had collapsed.
“His heart became so heavy, collapsed his lung and caused other problems,” Noelle said. “It was like a snowball effect.”
Doctors were forced to place Gavin on a device called a Left Ventricular Assist Device (LVAD) to keep his heart going. This apparatus pumped and circulated Gavin’s blood throughout his body while he waited for a donor heart.
“He’s the first baby in the Midwest to have that device put in,” Noelle said. “It was supposed to keep him alive until he found the heart.”
The Motzko family did not know what to expect at this point. It had only been a few months, and the journey had already been long.
“I never knew what a process organ donation is,” Noelle stated. “How your illness can change your status on the list. It’s hard to believe. It has to be perfect timing.”
An emotional triumph
On April 9, 2010, only a day after the LVAD was incorporated, the Motzkos received their miracle. Doctors had found a match for Gavin.
“I think that day we were all on pins and needles,” Noelle said. “At any point, something could go wrong. They had to fly the heart and get it into Gavin.”
Yet Gavin’s surgery was nothing but a success, and he was released from the hospital on May 3.
Gavin, along with his parents, are staying at the Gift of Life House in Rochester for three months of follow-up care.
Gavin must receive continued care to ensure that his body is accepting his new heart.
“There has been no sign of rejection so far,” Noelle said.
“He’s doing so well it’s amazing,” Noelle said. “Once he got a new heart, they haven’t had the ups and downs anymore. He was out of the hospital in three weeks.”
Now, the Motzkos want to tell others how important organ donation is.
“We like to help promote organ donation in any way,” Noelle said. “It’s just amazing what you can do. I think one donation can save up to 60 lives.”
What’s more, the family could not be more grateful that Gavin received a heart at only ten months of age.
“Child organ donation is very scarce,” Noelle said. “It has to match a certain age and weight. Gavin was very lucky.”
“I guess I didn’t think about how important organ donations were until this all happened,” Noelle said. “For someone this age to be given a second chance is pretty amazing. For a family to give their child to save others is unbelievable.”
Organ donation obviously impacts lives.
“It’s a bittersweet time,” Noelle said. “I still get teary-eyed about it.”
Gavin has been making amazing progress with his recovery.
“It seems like its been such a long journey,” Noelle said. “It hasn’t even been a year, and we’ve been through so much.”
When he is older, Gavin should be able to do things just like any other child.
“The first year is the hardest,” Noelle said. “By the time he’s four or five, his immune system will be built up. He should be able to play sports just like any other boy.”
Yet, Gavin could need a heart transplant again in his teen years.
“That’s where we would fundraise again,” Noelle said. “That is where the annual benefit would come in.”
Although Gavin will face a few medical complications in his future, his family believes that he has a bright road ahead of him.
“He’s a very bright kid,” Noelle said. “He is a happy child. He’s going to be the playful little boy.”
“He’s a big flirt with all the nurses,” Noelle joked. “He’s got a really loving personality. When we last visited him, he just sat there and smiled.”
Gavin’s interests include going for long strolls with his mom and dad, sledding, camping, reading books and watching Twins baseball and Vikings football.
“He loves to go on bike rides with his parents,” Noelle said. “They actually bike to all of their appointments.”
Right now, everything needs to be sanitized for Gavin.
It’s all about the immune system,” Noelle said. “It’s kind of a check and balance system.”
“If he gets sick from the germs, his immune system is so low, so he can’t fight things off,” Noelle said.
If Gavin’s immune system gets too strong, it will attack his heart.
“To prevent rejection, they keep his immune system low,” Noelle said.
Yet the Motzkos are simply looking towards the future. “We’re looking forward to many Christmases and holidays and normal family time,” Noelle said.
The continued struggle
With the cost of a transplant exceeding $500,000, many patients are faced with a wave of financial burden.
The doctors at Mayo Clinic estimated Gavin’s heart transplant at $100,000.
“Thank God they had the insurance,” Noelle said.
The Motzkos work with the Children’s Organ Transplant Association (COTA), a national charity that assists in fundraising for transplant patients.
“They are the ones who kind of helped us get our jumpstart on fundraising,” Noelle said.
In Eden Prairie, volunteers are raising funds and hoping to reach the $100,000 mark. So far, $31,561.08 has been accumulated.
The expenses faced by the Motzko family are ongoing, as Gavin may require further surgeries in the future.
“Hopefully we get close to $100,000,” Noelle said. “It’s hard to come home and worry about all that other stuff when you have greater things to worry about.”
As Sarah’s best friend, sister-in-law and co-worker, Noelle has taken much of the fundraising upon herself.
“I tried to get volunteers and ideas,” Noelle said. “Things just kind of came together. The community just came together to help them.”
“You’re just amazed at how people help out,” Noelle said. “The volunteers are amazing. He’s got a lot of prayers lifting him up.”
So far, Sarah has organized a church pancake breakfast, a children’s consignment sale and a spaghetti dinner. A girls’ night out event has also been planned for October.
As with all things, this comes at a cost. “There are just general expenses with the fundraising as well,” Noelle said.
If you could help make a miracle, would you? On Gavin’s site, the COTA organization asks readers this question.
The Motzko family needs the help of community members now more than ever.
According to Gavin’s website, donations for Gavin can be made at any Wells Fargo Bank branch or mailed to the Children’s Organ Transplant Association.
The Motzko family will sponsor a raffle, silent auction and pig roast on Saturday, June 19 at the American Legion Post 398 in Mound located at 2333 Wilshire Boulevard.
The meal will include meat, calico beans, cucumber salad and a dessert.
The grand prize for the raffle is a three-burner Ducane Affinity 3100 LP Gas Grill in Black made by Weber.
Silent auction items include a two-night stay at a hotel in Alexandria, an autographed Timberwolves yearbook, Regis gift baskets (worth $250), two $100 dollar savings bonds from Lake Community Bank in Long Lake, paintings and a No Name Steak gift pack.
Tickets are $10 for adults, $5 for children 2-10 and free for children under two.
If you would like to contribute gift certificates or other donations, contact Volunteer4gavin@hotmail.com
For suggestions or more information about volunteering contact Noelle Taylor, community coordinator, at (612) 860-0815 or email@example.com.
To learn more about Gavin, check out his website at www.cotaforgavinjosephm.com.
“It’s so scary, and it’s encouraging to know how many people are there to help if you ask,” Noelle said. “I kept thinking something good’s gotta come, and it did.”