COTA for Remi

Our Story

Remi was just a typical happy baby doing what babies do: eating, sleeping, and melting hearts in his little corner of Vermont with his parents, Maggie and Gianni. Then, at 3 months old, a routine respiratory infection took a terrifying turn.

When Remi was receiving nasal suctioning at their local ED, he developed a nosebleed that would not stop. As the bleeding continued, lab results revealed something that no parent ever wants to hear: Remi’s tiny body was struggling to clot blood properly, and his liver was enlarged and had fatty deposits.

Overnight treatment helped bring his clotting factors back into a healthy range, and by morning Remi was clinically stable. However, his liver remained compromised, and the underlying cause was still unknown. After consulting with a pediatric hepatologist, it was clear that Remi needed a full evaluation at Boston Children’s Hospital (BCH), one of the premier children’s medical centers in the country. So, he was transferred from the University of Vermont Medical Center to BCH, not knowing exactly what lay ahead, but knowing that BCH was the place that he needed to be.

Once at BCH, Remi received a diagnosis of Biliary Atresia, a rare liver disease affecting the bile ducts and biliary tree. On May 14th, only four days after his ED visit, Remi received his first surgery, called a Kasai surgery, in hopes this would buy his liver more time, but due to his age, he only had a 20% chance of it succeeding. After about a month in the hospital, Remi was discharged and able to go home with his family. The road ahead would not be easy, and it would not be cheap. There are the expenses that insurance simply doesn’t cover: gas for the trips back and forth between Vermont and Boston, lodging so mom and dad can stay close to their son, meals while they’re away from home, and income lost from the time they’re having to take off from work unpaid.

After two weeks of being home, Remi developed cholangitis and sepsis as a complication from his surgery and was promptly readmitted to Boston Children’s Hospital. Unfortunately, the infection worsened his liver disease, in turn causing more health complications requiring him to be added to the national transplant waiting list. While he waits for his transplant, he is spending time in and out of the hospital for help with his nutrition, fluid management, and close monitoring of labs and clotting factors. Due to his high medical needs, Maggie has not been able to return to work, nor will she be able to for the foreseeable future, which is putting financial strain on their family during an already trying time. 

Remi’s parents need to be focused on one thing and one thing only: their son. Any amount you can give to COTA for Remi—whether it’s $5 or $500—helps take one worry off their plate so they can put their whole hearts into being there for Remi. And if you aren’t in a position to give financially, please consider sharing this page. Every share puts it in front of someone who might be able to help.

Remi is 6 months old. He deserves a fighting chance, and his parents deserve to fight for him without the weight of financial strain on their shoulders. Thank you for showing up for this little family.

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.