Memorial fund for Tobias Matthaus Schoenemann

Hi, my name is Marissa and I am fundraising for my beautiful nephew, Tobias and his family. My brother Matt, his wife Faith, their daughter Saria and son Tobias are an amazing and special family. They have been through so much in the last 4 years and I want to seek help in anyway I can for them, and spread awareness. Tobias, who is almost 4, was born with HLHS. Congenital heart defects (CHDs) are problems with the heart’s structure that are present at birth. Many go undetected before it’s too late. My brother and his wife were fortunate enough to learn of Toby’s diagnosis during pregnancy, but many others are not as lucky. Hypoplastic left heart syndrome (HLHS) is the most common *severe* congenital heart defect. The syndrome is a rare disorder in which the left half of the heart is undersized and cannot perform its function of pumping blood to the body. Without surgery, it is fatal. Symptoms of HLHS usually appear soon after birth. HLHS cannot be corrected, but reconstructive heart surgery can usually help the baby live and grow. Toby has successfully underwent 2 open heart surgeries. Hypoplastic left heart syndrome is treated through several surgical procedures or a heart transplant. (Essentially, Tobias is 1 in 100,000) In the long term, these children have an increased risk for complications such as heart failure and heart rhythm problems. They are also at risk for digestive and liver problems. This year so far has come in with a whirlwind of change for their little family, and especially for our warrior Tobias. Last years testing for Tobias, brought his parents and his team at SickKids to the realization that their best way forward is Transplantation. He was officially listed at the end of summer 2022 with the hope he could remain stable at home. On January 7th, his parents made the hard decision to have him admitted to hospital for additional supports, to avoid further decline in his heart function, and keep him a candidate for a new heart. Tobias is currently in heart failure. His surgical team and doctors at SickKids have determined that Tobias is declining and he is in need of a bridge to help him until a heart becomes available. His parents have made the decision with his team and Tobias will be proceeding with a The Berlin Heart Surgery. The Berlin Heart is a heart pump that maintains blood flow in babies and small children with serious heart failure. The Berlin Heart is an effective therapy to bridge children to heart transplantation. To date, the Berlin Heart has been used in approximately 1,000 children worldwide and is the only device of its kind available for babies and children with severe heart failure. This is an extremely difficult time for this family emotionally and financially. Between driving back and forth from their home to SickKids in Toronto, as my brother has to remain working and operating his company during this time. Any donations towards gas, food or rent towards the place they will need to rent after his surgery in order to be close to him, or just thoughts and prayers are greatly appreciated. Thank you! To all of our friends and family that have supported Tobias throughout his journey, and help us spread awareness by sharing his story! #heartwarrior