Goodbye to the old Mott, from Maddie’s Mom

As we prepare to move into the new C.S. Mott Children’s Hospital this December, many of our staff and families have been reminiscing about the countless memories we all have from the more than 40 years in the current facility.  This week’s post contains the transcript of a story one of our beloved families shared with us at a recent employee gathering to say “goodbye” to the old Mott building.  We would like to thank Shannan for sharing this beautiful story. We are lucky to have had you and Maddie be a part of our Mott story and we are so honored to have one of the beams of the new building bearing her name.

Hello, my name is Shannan Shaw, although most Mott people know me as “Maddie’s Mom.” My daughter Maddie was an inpatient on the 5th floor PCTU for almost 16 months straight. She was admitted February 9th, 2007 just before her 3rd birthday and she took her last breath here on May 27th, 2008.  Mott was her home for nearly 1/3rd of her life. It was also my home away from home. Our place to play, feel sick and get better, our place to work, to stress out, die of boredom, our place to cry and our place to have hope beyond reason. This was the place where our future was decided.

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Two families linked by one heart

Tommy Schomaker, recipient of a heart transplant at Mott Children's Hospital

This week we’re featuring a guest blog post by Colleen Schomaker, the mother of one of our “little victors.”  The Schomaker family’s story has recently been featured in several television news segments as well as a popular blog, and we’re honored she was willing to share her thoughts with us as we celebrate the kick off to U-M’s Wolverines for Life donor drive.

My name is Colleen Schomaker and I’m proud to be a ‘Mott Mom’. Our son, Tommy is ten years old and was born at University of Michigan’s C.S. Mott Children’s Hospital in December of 2000 with a serious heart defect. Since that day, Mott has been our second home. Like many Mott parents and patients, words cannot fully describe our gratitude and admiration for the wonderful staff we’ve seen over the years at Mott. (Now we get to watch this new hospital take shape, and it’s something we as patients and families feel such pride and excitement over.)

Over the last ten years, our son has endured many hospital stays, countless procedures and 5 open heart surgeries before the age of 5. Our story is long and winding, but we are blessed to have always been surrounded by a great medical team, along with amazing friends, family and a strong faith to lean on. We are also blessed that our son is still with us and presently doing quite well. On this journey we have also met countless other patients, some who have become dear friends, and we’ve watched them courageously fight their battles, but in the end have had to say goodbye to their child much too soon.

Tommy went into severe heart failure in early 2008 at the age of 8. He could not attend school, slept a lot, used a wheelchair, had to be carried up steps, and couldn’t keep food down. It was then that our cardiology team at Mott decided that, unfortunately, it was time to list him for a heart transplant. We were devastated as we tried to wrap our minds around this new reality and quickly moved into the next phase of our journey. Tommy’s chances of finding a match were low but he endured more medical therapies, 24 hour home infusions and lots of prayers and love. One year after being listed for a transplant, Tommy’s heart didn’t have much time left and the call we thought would never come…came. In the middle of the night on June 3, 2009, Tommy’s ‘gift of life’ was on its way.

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All-star inspiration

NHL star and former U-M hockey player Steven Kampfer with his sister, Kristen.

Born with multiple heart defects and severe scoliosis, Kristin Kampfer, 25, has undergone more than 20 surgeries at U-M C.S. Mott Children’s Hospital.

Now a healthy, happy young woman with a blossoming career, Kristin will be honored this Thursday by her all-star brother, Steven Kampfer, a former U-M ice hockey player and current Stanley Cup champion with the Boston Bruins.  Stanley Cup in hand, Steven will be visiting the U-M Yost Icea Arena, posing for pictures and signing autographs.  Inspired by his sister’s humble attitude, Steven has elected to donate the proceeds from photo sales to Mott.

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Mott supporters take to the streets

Braving humid conditions, a group of four cyclists recently rode from Traverse City to Chelsea as part of the 24th annual Make-A-Wish charity bike ride. With the C.S. Mott logo emblazoned upon their backs, the group traveled more than 300 miles over the course of three days in steamy July.

The team was lead by Neal Blatt, M.D., Ph.D., as Assistant Professor in Pediatric Nephrology, and included four other cyclists: Chrysta Lienczewski and Christopher Tallman, clinical research coordinators in Nephrology and Urology, along with Pat Ward and Jeff Crause, members of the Ann Arbor community.

Proceeds from their ride support the activities of the Michigan Make-A-Wish Foundation, which grants wishes to children with life threatening medical conditions. This year, the U-M team raised over $10,000 of the $1.8 million that was raised by the more than 850 cyclists participated in the three day ride.

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Heart on the mound

As he visited C.S. Mott Children’s Hospital recently, tiny feet followed in Tyler Brennan’s large footsteps. Hopeful parents followed closely behind him.

Tyler is a role model for the group of children gathered at Mott to meet him.  A source of comfort for worried parents, he is an inspiration. To the surgeons and staff at Mott who have come to know him, he is a pioneer.

Tyler was born with hypoplastic left heart syndrome, a congenital birth defect occurring when parts of the left side of the heart do not completely develop.

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A Grateful Family

Ask Megan and Nick Demeester who saved their son Riley’s life, and they will tell you about a long list of people.

It has been over four years since Riley’s birth and long hospitaliza­tion at the University of Michigan C.S. Mott Children’s Hospital, and yet the De­meesters still have a strong appreciation for each person who helped make Riley the healthy boy he is today.

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