On behalf of my good friend, please see message below.

“Hi, my name is Tafari Nelson, and I am fundraising to cover my daughter’s medical expenses for her open heart surgery that was successfully done on April 1, 2024. We are looking at a bill that totals over $300,000 (physician and hospital fees included). Medical insurance covers approximately $280,000 of this leaving over $20,000 minimum to be paid out of pocket. We would greatly appreciate your help!

But enough about the money. Let me tell you a story. About the strongest person I know. Namaari Nelson. Nami. My daughter! A beautiful little girl said to look like a carbon copy of her older brother. We had no clue of the story that was being written, but we were right at the beginning of it.

Everything seemed normal when she was born, but this could not be further from the truth. While undergoing the necessary tests for discharge, the doctor heard a murmur in her heart. Heart murmurs are quite common in newborns so at that point, there was no need for concern. It was not until they tested her oxygen saturation levels that they knew something was critically wrong. Oxygen levels of the average person typically ranges from 95-100%. She was in the low 70s and dropping, reaching as low as the low 50s before being rushed to the NICU, where she was stabilized, settling in the high 70 range. With her levels not increasing any further, it was likely that this was a heart related issue. This potential issue required her to fly to a hospital with the specialized equipment and team needed to diagnose her condition.

She was sent on an emergency flight to Miami where a room and team was already waiting for her at the Nicklaus Children’s Hospital, formerly known as the Miami Children’s Hospital. After several tests were done, it was now clear that she had a congenital heart defect, a disease that affects approximately 1% of the human population. Her case happened to be a very complex defect. Transposition of the grade arteries with a VSD, pulmonary stenosis, and a straddled mitral valve. There are 4 sections of the heart. In a normal heart, blood flows from the heart to the lungs, back to the heart, out to the body to supply oxygen the body through its tissues, and then back to the heart to “pick up” more oxygen. A four sections of the heart work in harmony and are connected. In Nami’s case her four sections works as two separate systems. One pumped blood from the heart to the lungs over and over without going to the body and the other pumped blood from the heart to the body over and over again without going to the lungs to pick up more oxygen. Had it not been for the VSD, a hole in the wall between the two bottom chambers, oxygen rich blood would not have been able to mix through that hole to the other side that was only going to the body, and she would not have survived. This would require open heart surgery to repair. On day one, doctors performed a procedure known as Balloon Septostomy to widen a hole in the wall between the top sections of her heart for additional mixing of oxygen rich blood. She was monitored for the next couple weeks, the team collecting as much information as they could before making a decision on the details of the surgery. During this monitoring period, her levels began to drop and nothing the team did could bring it up. She was rushed into emergency surgery, where a shunt was placed placed to allow better blood flow to her lungs. The surgery was successful! But this was only a temporary solution to the problem. This interim surgery gave her time to grow before the main surgery would have to be done. The bigger she is, the more room surgeons would have to work with. And grow she did!

She was discharged from Nicklaus 9 days after surgery and was in the hospital for a total of 29 days. Florida would be her home for the next 3 months. Aside from not being home and her periodic visits with the surgical team and cardiologist, life started to feel normal again. She started acting like a normal baby again. After doctors were satisfied with her progress outside of the hospital, she was finally cleared to go back to the Virgin Islands.

It is now November. All is well and continues that way. She loves the island. She loves the sun. She loves the beach. She loves the vibe. Every month and a half or so, she flies back up to Miami for a check up with her cardiologist. After a couple visits, it was time to talk main surgery. Due to the complexity of her case, Nicklaus was favoring a surgerical procedure that would significantly affect her quality of life, a single ventricular surgery, where the two bottom chambers are made into one by removing the wall between them. Her cardiologist sent her case to Boston Children’s Hospital for a second opinion. Globally, Boston is one of the leading hospitals in biventricular surgeries (surgery that leads to normal quality of life). If there is any team that would be able to perform this surgery, it would be them. After weeks of waiting, Boston confirmed that they could perform this surgery. After a few more weeks, a surgery date was set in April. In March of 2024, she was on a flight to Boston.

In Boston, she met with the team. They performed pre op tests, and finalized their plans before surgery. The surgeon explained the details of the surgery and the different options that will be available once inside. On surgery day, she was taken back to the operating room at 8 in the morning. She was back there for about 7 hours! The surgery was successful! The surgeon performed a surgery that was first done in 1968! Recovery was scary in the hospital but after 2 weeks, she was discharged. After an additional 2 weeks of check ups and tests, she was cleared to fly back to the Virgin Islands. Now she is recovering beautifully and this is not the end of her story!

This is the story of my daughter. My princess. Namaari Nelson! GOD IS TRULY AMAZING”