As you may or may not know, my son Ayrie is 3 years old and has as aggressive case of Recurrent Respiratory Pappilomatosis (RRP) and has had 15 surgeries in 17 months to remove benign tumors from his larynx. We have tried all of the treatments available to us in two major cities, and decided to travel to Boston to meet with Dr. Hartnick to try an experimental but promising new treatment. If the treatment is successful, we will slow the growth of the tumors on Ayrie’s vocal cords, lengthen the time between surgeries, and improve the quality of Ayrieâ€™s voice. In doing so, we will also reduce the risk of complications due to human error, scarring, anesthesia, and the potential long-term effects on Ayrieâ€™s behavioral and cognitive development.
Ayrie had surgery with Dr. Hartnick in Boston this past July and I felt more hope than I had dared feel in the two years that we have been battling RRP. You can imagine how devastated I was six weeks later when Ayrie was admitted to a hospital in our home town of Minneapolis, where I was told that that Ayrie’s airway was so compromised by scar tissue that he needed to remain in the hospital until he could have a surgery that would result in his being sedated and on the ventilator for five days with the likely result of a tracheotomy and a total hospitalization of nearly a month.
I knew that Dr. Hartnick was on vacation but I contacted his assistant was put in touch with him. The most I hoped for was advice but instead Dr. Hartnick offered to come home from vacation to treat Ayrie himself. Because I was told that Ayrie’s airway was complicated to the point that it was unsafe to discharge him and I would have to leave the hospital against medical advice, it was entirely unclear to me what I should do. Ultimately I decided that in the short time I had known Dr. Hartnick I developed a high degree of trust in his skills and judgment. If anyone was going to decide that Ayrie needed such a serious intervention I wanted it to be Dr. Hartnick.
Once I decided to take the risk to travel to MEEI the rest moved very quickly. We were on a flight that night and a nurse was called in to be with Ayrie, the only pediatric patient at that time. A surgical team was assembled and we were in the OR early Sunday morning. The news was good and Dr. Hartnick called me from the operating room to let me know that I didn’t need to worry because Ayrie looked okay. In fact, he looked great and Dr.Hartnick thinks the treatment is working. No coma state. No tracheotomy. Just good news.
The bottom line? Ayrie’s disease in under control again thanks to the treatment he received in Boston. I have had limited employment since all of this began and my income is less than half of what is was and therefor can not afford to seek the best medical treatment for my son. But you have givengenerously, allowing us to continue to travel to Boston for treatment and quite literally improving our lives in both tangible and inexplicable ways.
From the bottom of my heart,