COTA for Dylan M

Our Story

This year Dylan will be celebrating his 10 year anniversary of his liver transplant that he received August 8, 2009. A lot of people do not know that Dylan even had a transplant and what the beginning of his life was like, but thanks to COTA Children’s Organ Transplant Association and an updated webpage for Dylan we can share with everyone this milestone!!

Dylan was born with Maple Syrup Urine Disease (MSUD) which is a rare metabolic condition in which 3 essential branch chain amino acids where toxic to his body. Because of Newborn Screening we were notified by the pediatrician 4 days after he was born and immediately admitted to Children’s Hospital in Chicago, we stayed in the PICU for about 3 weeks while they tried to get his amino acids levels to a normal range.

After he was released he would have routine blood work which sometimes was once a month or sometimes multiple times depending on what the levels where at…It was all about the levels back then and mixing his formula with just enough protein so he can grow. We would either have to go downtown to the Hospital or Glenbrook depending on the urgency of the labs. Every little illness scared put us on edge. When we learned about the liver transplant we knew this was the right path for us. We knew we were trading one disease for another chronic condition but the quality of his life would be better.

So we went to the one place that had been doing Liver Transplants for MSUD children “Children’s Hospital of Pittsburgh” The rest is history…

Throughout 2019 I will be doing different events to help bring awareness to Organ Donations as well as to replenish Dylan’s COTA Account. Back in 2009 we raised close to $30,000 which has gotten him up to this point but his medical expenses will never go away and this account helps with all the extra medical cost he has each year.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.