Hi, we are Diana Burneo Fernandez and Patricia Burneo Cunningham, and we are starting a fund for our niece, one-year old Luciana Burneo, and her family, five-year old Arianna, and single mom, Duve Angulo. Luciana was born on January 4, 2024, and she is a bundle of joy. She was born right on her due date and has certainly lived up to her name. She is a sassy, happy and sweet baby girl who is starting to show her personality more and more each day. Her smile never fails to light up the room. She is truly a Capricorn! Last February, Luciana had a cold and her mom Duve took her to a local urgent care for a screening. Duve was informed that something wasn’t right and that it was very strange that Luciana was breathing with her belly (or belly breathing). They recommended taking her to the emergency room because they were suspecting pneumonia. Duve took Luciana to the emergency room of the local hospital. After several tests, Duve sensed something wasn’t right and noticed that the nurses were talking among themselves, and then called a doctor. The doctor noticed that the x-rays and all the test results were showing something abnormal with Luciana’s bones. The doctor made some phone calls and in less than two hours they transferred Luciana to the Children’s Hospital of Philadelphia (CHOP) for further testing, to determine why the density of her bones was so different. After another set of tests Duve was told that Luciana might have a rare disease called osteopetrosis. Osteopetrosis is a group of rare disorders that cause bones to grow abnormally and become overly dense. When bones become overly dense, they are brittle and can fracture (break) easily. In addition, bones may be misshapen and large, causing other problems in the body. Luciana may need a bone marrow transplant because this disease could be deadly. In the first couple of months after her first hospitalization, Luciana had to return to urgent care and the hospital many times due to repeated colds and a hard time breathing. She was put under very strong medication to slow the growth of her bones. She also had to undergo different tests and exams until the final diagnosis. In March, the family received both good and bad news. Luciana had an extremely rare gene defect that causes a life-threatening immune system deficiency. She needed a bone marrow transplant urgently. The family was tested, and no one was compatible with Luciana. Also, prior to the transplant, Luciana would need to undergo chemotherapy. The good news is that if the transplant works Luciana can live a long and healthy life. Thankfully, one unrelated match was identified in the bone marrow donor database and the donor was willing to continue with the donation procedure. In the time leading up to the transplant, Luciana will go under chemotherapy and get IVIG antibody infusions once a month to boost her immune system. After the transplant, the Burneo Angulo family will need to remain in total isolation to keep Luciana safe, preventing Duve from returning to her job anytime soon. Additionally, Duve will need to travel frequently to the Philadelphia hospital to have Luciana evaluated. Any donation to support the family with hospital bills, insurance costs, and living expenses would be incredibly appreciated. If you can, please share this note with friends, family, and anyone willing to help support Luciana, Arianna and Duve through this difficult time, and help ensure better times ahead.
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