hover over thumbnails to see pictures of Mark
Mark was born in June of 2002. He was full term. His only complication after birth was that, within the first few hours of life he had difficulty regulating his own temperature. Within weeks of his birth, it became apparent that something was wrong with Mark. He started becoming a regular patient at Children’s Hospital in Boston’s specialty clinics.
On average, he spent about a week a month as a patient in the hospital there. Over the course of his short life, he has been followed by Pulmonary, Gastroenterology, Immunology, and Otolaryngology specialists from Children’s. At the age of 1, early intervention specialists came into the home and worked with him 2 times a week due to his speech delay. By the time Mark had turned 2, Mark had so many health complications that he had already had multiple procedures that required him to be put under anesthesia.
We were told by the pulmonary clinic that something was indeed wrong and that they needed to do more testing to find out exactly what it was. They did a lung biopsy and found out, after a month of tense waiting, that he was a Cystic Fibrosis carrier and that he had Emphysema. Not only did this news completely take us all off guard, but it completely changed everything about our lives from that moment on. At this point, he was started on chest physical therapy 5 times a week.
Since the age of 3, he has been on daily preventative antibiotics to help ward off the recurrent infections. He did relatively well on this treatment for about a year and then things went downhill for him.
At the age of 4, Mark had a particularly difficult time handling illness. He was constantly getting sinus infections. After about 5 infections, they decided to do a cat-scan and found that his sinuses were blocked. Mark was scheduled for a sinus surgery to try and fix the problem within his sinuses. 9 months later, the infections were still occurring, so he had yet another sinus surgery in hopes to solve this ongoing problem for him.
After trips back and forth to his otolaryngology and pulmonary specialists, they decided to get immunology involved and do some more testing to see if there was more of an issue that had not been discovered as of yet. After 3 weeks of waiting, we were told that he had in immune deficiency. The immunologist decided that gamma globulin replacement therapy would be the best option for him. This treatment consisted of a 2 hour infusion which consisted of 2 injection sites. Mark has been on the treatment for a few months now and, while he still is having some health issues – he is responding well to the treatment.
Mark is an amazing little boy who loves Mickey Mouse, sports, family and playing with his friends. Mark has more fight in him than any other person I know. His love of life has carried not only him through the most difficult of times….but all of us through them as well. He has shown us not only the power of love, but the power of HOPE as well.