Zacks Medical/ Traveling Fund

When Zack was 4months 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 recieved his first bone marrow transplant at Memorial Sloan Kettering in NYC at the age of 10 months. Unfortunately it didnt "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 5years old we attemepted another BMT, again in NYC, in hopes that all the research and studies that had been done for SCID would be affective our second try. It did give Zack some fighting immune stystem, but not at a 100% function. To this day he recieves 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 sucsess rate of treatment is almost to the point of 100% cured. Unfortunately the diagnosis for Zack was truley too late to have such a sucsess rate. However we are happy and feel blessed for the outcome that it did provide. Without it Zack wouldnt have survived another year. The second 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 supplimental oxygen 2 years after his BMT and eventually his lungs completly shut down and he was placed on a ventilater when he was 9years old. He fought his heart out for 5 months to get healthy enough while on the ventilater to be accepted on the National Organ Donor list. And he did it!!! Wi thin 2 weeks of getting on the list he recieved 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 progressivly gotten worse. He also has developed kidney disease and that too over the last year has gotten considerably worse. 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 isnt an option because of his kidney disease. We are going to be starting a treatment called photo pherisis 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 the photo pherisis is the only option to help with this rejection. All these illnesses and treatments have taken its toll on Zacks body. His body fights for survival everyday. He has scoliosis and very low bone density so any type of intervention isnt an option for his spine. About 6 years ago Zack was diagnoised with an aggresive form of sqamous 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. Because the majority of Zacks doctors are in Boston we make multiple trips a month to these specialist. However we have a wonderful team of doctors at the Lafayette Cancer Center of Maine right here in Brewer that work closely with his team at Boston Childrens. Honeslty without them our trips to Boston would be as much as weekly. The trips are very wearing on Zack, so we feel blessed to have them in our lives. His life has been anything but what most people would consider "normal", but its our normal. We have made it work. Zack will be making several more trips to Boston every month for many doctors appointments and surgeries.