When Zack was 4 months old he was diagnosed with SCID, severe combined immune deficiency, and at the time this was a very rare form of immune deficiency. He was born without a working immune system, no T-cells or B-cells. He received his first bone marrow transplant at Memorial Sloan Kettering in NYC at the age of 10 months. Unfortunately it didn't "fix" the problem with his immune system and we basically lived in a "bubble" for the next 5 years, keeping him away from crowds and away from any potential threat of a cold, flu, infection or anything else that would be life threatening to Zack. When he was 5 years old we attempted another BMT, again in NYC, in hopes that all the research and studies that had been conducted for SCID would be affective our second try. It did give Zack some fighting immune system, but not at a 100% function. To this day he receives monthly infusions to boost what he has. Today, SCID is part of the newborn screening in Maine. If detected early, intervention is immediate and the success rate of treatment is almost to the point of 100% cured. Unfortunately the diagnosis for Zack was too late to have such a success rate. However, we are happy and feel blessed for the outcome that it did provide. Without it, Zack wouldn't have survived another year.
BMT came with its own terrible side effects. The chemotherapy that he had to prepare him for the BMT caused his lungs to develop pulmonary fibrosis. He became dependent on supplemental oxygen 2 years after his BMT and eventually his lungs completely shut down and he was placed on a ventilator when he was 9 years old. He fought his heart out for 5 months to get healthy enough while on the ventilator to be accepted on the National Organ Donor list. And he did it!!! Within 2 weeks of getting on the list he received a double lung transplant a few months after his 10th birthday.
He showed signs of chronic rejection a year after transplant and over the last 6 months it has progressively gotten worse. He also has developed kidney disease that has gotten considerably worse over the last year. Unfortunately, at this time, transplant is not an option for Zack because the risk is too great. His lungs are not strong enough to survive a kidney transplant and a lung transplant isn't an option because of his kidney disease. We are going to be starting a treatment called photopheresis in hopes that it will stop, or even reverse the rejection in his lungs. If so we may be reconsidered for the kidney transplant and his father would be the donor. His dad was his bone marrow donor so he is a 100% match. At this time, photopheresis is the only option to help with this rejection.
All these illnesses and treatments have taken its toll on Zack's body. He fights for survival everyday. He has scoliosis and very low bone density so any type of intervention isn't an option for his spine. About 6 years ago Zack was diagnosed with an aggressive form of squamous cell carcinoma. He has had close to 100 areas surgically removed from his head, face and arms. The most recent spot was found inside his mouth and the doctors removed an area about the size of a nickel from his tongue. He needed to relearn the simple act of chewing and talking. He did it with great courage and has adapted with not much trouble at all. His life has been anything but what most people would consider "normal", but it's our normal. We have made it work. Zack was able to attend school when he was healthy enough to do so and made some life long friends. When he wasn't, he was graciously tutored by some of the best teachers around and they too, became great friends to Zack.
Zack is happiest when he is playing video games. He hopes someday to work for Nintendo. He has a sense of humor that would make him famous on stage and he loves to tell jokes and play practical jokes on anyone he can. His favorite comedian is Bob Marley. He loves animals and has a cat Fluffy and a dog Pikachu. His favorite thing to watch on the internet is funny cat and dog videos. He also enjoys camping with his family and friends and his favorite place to go is Katahdin Shadows in Medway, Maine. We have our annual trip in August planned and he is looking forward to seeing all the friends that he has made over the years of us going to the campgrounds Nascar Theme Weekend.
He is tiny and short in stature, however his heart, mind and soul are bigger then that of any grown adult I know. Zack has kept such a positive, love life attitute through everything. His motto is STAY CALM AND FIGHT ON! He has shown his family how to live that way as well. I believe that if you meet Zack once you will forever be changed. He is a true miracle and it shines through the second he says hello.
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