Help Sully Fight | Donation Tee

Sully is gonna be 13 in November. He’s going to be in 7th grade at Jedlicka, tho he will be doing homebound. He was born with a heart defect called Tetralogy of Fallot with Pulmonary Atresia, (TOF/PA). When a baby is in utero, you have something called the ductus that pumped the oxygenated blood from the baby’s heart to the baby’s lungs. When the baby is born, the ductus closes and the pulmonary valve takes over to pump the oxygenated blood from the ventricle, up to the pulmonary arteries, to the lungs. Sully’s valve was sealed shut. He had his first open heart surgery (OHS) when he was 3 days old. He had the surgery to shunt the blood until he was big enough for a valve. It’s called the Blalock Taussig shunt. Then he had OHS #2 when he was 6 months old, and he had a 13mm human donor pulmonary valve placed. That valve lasts him until he was 10. Which is remarkable. He had a 19mm human donor replacement in 2022. That’s when they discovered low platelets. There’s a myriad of reasons for low platelets, some unexplained, so we just monitored. In February 2024, a bone marrow draw showed his bone marrow was hypocellular. Your bone marrow is like a sponge. It’s saturated with all your cells. Sully’s bone marrow was only 15-20% cellular. In April, we decided to seek more help from somewhere else. After much research, we chose the U of Mn. They came recommended by most doctors around the country. We did tons of additional testing and found out Sully has Severe Aplastic Anemia. Essentially, at some point in his life, he got a cold or strep or something and his immune system responded to fight the illness, and then never calmed down. His immune system just repeatedly attacked his bone marrow until it failed. Through ALLLLLLL of this, Sully has remained a kind, funny, gracious, tenacious, sweet, and brave young man. I do not think I could be like he is if this stuff was happening to me. I am proudest mom there ever was. He’s the coolest kid. We always say, “Can’t go around it, gotta go through it.” It’s our catchphrase. He loves blue and green. He loves to game. He was just surprised with a new gaming PC to take down to the cities with us. He’s my little gamer nerd.  I have 3 older daughters and two of them have children. Sully LOVES being an uncle to 4 nephews. Sully loves life and people. He’s just wonderful. He’s my best friend.