Patient Stories

Our Little Victors

Here are some stories of Mott Children’s Hospital patients and their families. We thank our patient families for sharing their stories in hopes that it will help and inspire others.

Meet Laurence – Ann Arbor, MI

Laurence Carolin, 15, was shy and soft-spoken. After his diagnosis of a highly malignant brain tumor — glioblastoma multiforme, Laurence navigated his way in and out of the hospital, through several surgeries, chemotherapy and radiation with a wonderful mixture of simple childlike innocence, intelligence and a great sense of humor,. But despite his medical team’s best efforts, his cancer progressed. Laurence donated his Make-a-Wish funds to feed malnourished children in other countries, but he still feared that his short life would be a waste. “What else do I have to give to society but myself?” Laurence said. He wanted to donate his brain for research. He wanted to give us his tumor after his death, so that researchers at Mott could try to better understand his disease, hopefully offering improved treatments in the future. To read more about Laurence’s story, click here.

 

Meet Charlie – Richland, MI

Avink_CharlesCharlie’s story, in his parents’ words:

On October 3, 2009, at 1 day of age, Charles “Charlie” Victor Avink was transferred via Baby Bus from Bronson Methodist Hospital in Kalamazoo to Mott just hours after he was diagnosed with a congenital heart defect, d-transposition of the great arteries and an ASD. On October 8, Charlie was placed into the gifted and caring hands of Dr. Eric Devaney and his surgical team who performed Charlie’s 6+ hours “switch” surgery. Charlie developed a post-surgical chylothorax and had some unexplained desaturations which kept us at Mott a little longer, but on October 21, we returned home to finish healing. HAIL to Charlie Victor!

Meet Marisa – Flat Rock, MI

Disney Trip 2010 168Marisa’s story, in her parents’ words:

Marisa was born with a rare pediatric liver disease named Biliary Atresia. She suffered with chronic liver infections and a life-threatening upper-GI bleed as an infant. At 21 months of age she received her liver transplant at Mott. We are eternally grateful to the Mott doctors, nurses and support staff that have saved her life multiple times and continue to do a top notch job at keeping Marisa healthy. The Pediatric Liver Transplant Team is remarkable. Without them, our daughter would not be with us today. This picture was taken on her recent Wish trip to Disney World.

Meet Malachi – Ann Arbor, MI

Maddox_Malachi 2Malachi’s story, in his parents’ words:

Malachi was born in Ann Arbor, MI at the University Of Michigan Hospital. Malachi was a strong little hero at Mott Children’s Hospital because he had a tumor the size of a plum removed on his left lung before he was born. Malachi spent 9 days on ECMO and several weeks in NICU. Malachi came home when he was 7 weeks old on oxygen 24 hours a day 7 days a week for a year and on several medications. Today at the age of 4 ½ Malachi is able to do what any child his age can do with the exception of eating orally, which he is in the process of learning.

Meet Erinne – Canton, MI

Williams_Erin Rose 1Erinne’s story, in her parents’ words:

Erinne has been a Conquering Hero from the time she was diagnosed with Spinal Muscular Atrophy (SMA) at 14 mos old. Erinne has had many complications as a result of her disease — 19 pneumonias, 11 surgeries, 21 hospitalizations, with more to come. Mott has supported us in the way we have chosen to manage Erinne’s disease. Mott is our Family. SMA has robbed Erinne of the ability to walk, to use her arms independently and even the ability to care for herself and speak with a clear voice. But it cannot take away her will to live and it never will. Erinne is an inspiration and a Conquering Hero to everyone who meets her, and inspires others to live their lives to the fullest. Erinne may have SMA, but SMA does not have Erinne. She is my angel-on-loan and a gift from God. Erinne is a HUGE sports fan. She plays wheelchair hockey in a league of 50+ adults (only 1 of 5 females), wheelchair soccer and Miracle League Baseball. Erinne adores the Detroit Red Wings and avidly follows Michigan football and hockey. She hopes to visit the Big House someday. Erinne’s Mom was so thankful for all that the Mott Family has done for her daughter that she now volunteers in several areas of the hospital, including the Parent Advisory Committee. Suzanne feels it is the least she could do to give back to the hospital that has done so much for Erinne.

Meet Tommy – Rochester Hills, MI

Schomaker_Tommy 1Tommy’s story:

Tommy became a patient at Mott Hospital even before he was born, when he was diagnosed with Hypoplastic Left Heart Syndrome, a severe heart defect where half the heart fails to develop. Tommy endured 5 open heart surgeries before he was 5 years old. Unfortunately, Tommy’s heart began to fail. He went from a happy, active boy to a child that could no longer go to school, walk up stairs, or brush his teeth by himself. Then at 8 ½ years old, Tommy received the greatest gift of all- a new heart. Tommy still faces challenges, but his new heart has given him new energy, hope, and a new life. Through it all, Tommy has kept his “heart of gold”, always remembering other heart buddies he has met along the way.

Meet Aidan – Livonia, MI

Troxtel_Aidan-11-150x150Aidan’s story in his parents words:

Aidan has been a Conquering Hero from before he was born. We found out that Aidan had a bladder blockage when I was 18 weeks pregnant. Once we found this out, the doctors gave Aidan a 50/50 chance of living. We decided that we would give Aidan every chance we could for him to live. We had a bladder shunt placed when I was 20 weeks pregnant to help relieve the pressure in Aidan’s bladder. Aidan was born 6 weeks early at 34 weeks on 1/26/2008. He was meowing like a little kitten when he was born letting us know that he was here and was going to fight to stay here. Aidan was transported when he was 1 day old to the NICU at Mott Children’s Hospital. During the first couple of weeks in the NICU we found out that the bladder blockage did in fact damage Aidan’s kidney’s and that he would need a kidney transplant sooner than later. On 12/4/2009 Aidan received the greatest gift a kidney transplant at U of M. Before the transplant Aidan had been in and out of Mott due to pneumonia and dialysis complications for the first 2 years of his life. We have had to make some additional visits to Mott but not nearly as many as we did in the first 2 years of his life.

Share your story with us. Please contact mottdevelopment@umich.edu or call (734) 998-7705 if you would like to share your experience at Mott.