Alvir was born on June 8, 2008 and was diagnosed with Cat Eye Syndrome, a rare genetic disorder that involved several of his organs. The first of these problems is a coloboma or hole in his left eye that caused him to lose part of his vision in his left eye. When he was one day old, he underwent a colostomy and two weeks later had two separate heart surgeries, one of them an open heart procedure.
Alvir spent an additional two weeks in the Puerto Rican Cardiovascular Center before going home for the first time.
Within a short period of time, Alvir developed liver problems, leading us to Dr. Del Valle at the San Jorge Children‘s Hospital in San Juan where we learned that he would need a liver transplant. He was then referred to Dr. Sukru Emre at the Yale New Haven Children‘s Hospital where we arrived on June 29, 2009.
Alvir became critically ill on the day after our arrival at Yale and was immedi-ately hospitalized. The following week he suffered a cardiac arrest and we were told that it was likely that he would not survive. If he did survive, he would be faced with many problems including possible brain damage. Alvir did survive and two days later a second open heart procedure was performed. In addition, a pacemaker was installed. The incision soon became infected and his chest was opened again to remove the pacemaker.
After many weeks of recovery, Alvir was reactivated on the transplant list on October 21, 2009. Five days later, he received his transplant. A mild rejection and two serious viruses followed causing damage to both his new liver and his lungs. Alvir was placed on oxygen which now has been removed.
Today, our angel is doing well and always smiling. He is sitting up by himself and learning new things every day. We have high expectations for him and we believe that he will give us many more positive surprises.
We want to thank the Ronald McDonald House including Pattie, Nancy, Donna, Cathy, Maria, Vinnie, Susan, Brianna, Natalia, Claire and all of the volunteers for being so good to us and for making us feel at home. They have helped us through some emotionally hard moments and provided us with love, affection and understanding. Thank you very much. Without you, we could not have made it.
