Support Lenora's Life-Saving Surgery

My name is Brooke Long, and I’m fundraising for my daughter Lenora. Lenora is 14 months old and was born with a rare congenital heart disease (CHD). We found out something was wrong with the blood flow and anatomy of her heart while I was still pregnant at her 20-week ultrasound. During the duration of the pregnancy, she was being monitored by a team of doctors. It was a very scary time for our whole family. My husband, Cory, and our other two daughters, Ella and Amelia, were so excited for Lenora to join our family. Once she was born, she was diagnosed with Tetralogy of Fallot with pulmonary atresia and major aortopulmonary collateral arteries (TOF/PA/MAPCAs) as well as a VSD.

Tetralogy of Fallot with pulmonary atresia and MAPCAs is a complex heart defect where there’s a hole in the heart and a narrowed or missing pulmonary valve, which blocks blood flow to the lungs. The body forms abnormal blood vessels (MAPCAs) to try to get blood to the lungs, but they aren’t as effective. This makes it harder for the heart to send oxygen to the body, and surgery is usually needed to fix or improve blood flow.

After she was born, she was able to come home after 10 days in the NICU. We were sent home with monitors to measure her oxygen and give her time to grow and prepare for her surgical repair. After about a month at home, she was hospitalized in October 2023 after her oxygen dropped to 70% (normal oxygen levels are above 90%). During that hospital stay, she had her first open-heart surgery. The goal of this surgery was “unifocalization,” which would unify her blood vessels and make her heart pump more effectively. However, the extra arteries were too small at that time to do a complete repair. She was in the Children’s Hospital in New Orleans after that surgery for 5 weeks. Since then, she has been stable enough to return home with the goal of growing those arteries for a more successful surgery in the future.

Now the time has come where her oxygen levels are getting lower and her weight gain is minimal. Her complete surgical repair is scheduled for March 2025 by Dr. Frank Hanley at Stanford Children’s Hospital in California. He specializes in Lenora’s specific medical condition and is considered the best in his field when it comes to the surgery Lenora needs. The unifocalization surgery is a long 6 to 10-hour process that corrects multiple abnormal blood vessel connections by rerouting them to a single, proper spot in the heart, improving blood flow and heart function. We expect her to have a 3-4 week hospital stay after the surgery is complete.

We are asking for donations to help with medical bills, transportation, and lodging costs as well as lost wages from missing work to travel to California with her. Our family is so grateful that Lenora is such a strong warrior and we ask for any help so that we can facilitate our baby girl’s best chance at overcoming this disease. If you cannot donate monetarily to her cause, I ask you please share her story! Thank you from the bottom of our hearts ❤️