Thank You to the Toronto Star.

I have just read the article by the Toronto Star at thestar.com and we are very pleased with the work they did with the article. Elaine Carey, the medical reporter at the star did an excellent job researching the disease and we are so pleased with the number of people that will read the article and visit our site as a result. I had mentioned yesterday at the hospital that the difference between when a doctor writes a medical paper about the disease and when a major newspaper or someone who is experiencing the disease writes about the disease is who reads the work. Doctors write for other doctors to read. The latter write for the general public, and in this case I write for parents to read about the disease. So we are so pleased with the attention that this devestating disease will get today.

With such an in depth article there are only some very small additions that I would like to make. Parker resides on the reverse isolation unit which is isolated from the rest of the hospital. There are very few people that have access to the unit. Parker does stay in a reverse isolation room that is filtered regularly while on 8B; however, not all the rooms on the unit have a bank of filters. When a child undergoes a bone marrow transplant they reside in a reverse isolation room until their counts increase. Once that happens they move to a normal (but very clean) room on the floor. This is only the case for the children without SCID. Children with SCID must remain in their isolation room until they are discharged.

Parker is currently receiving enzyme replacement therapy by injecting the missing enzyme twice a week into his muscle. The idea behind this is to give Parker the enzyme that his body cannot produce so that the dATP does not run rampid in his body killing off his immune system. From my reading, this therapy works very well for two to three years but for some unknown reason the injections become less effective with time. For this reason we do not feel it is a viable final solution to ADA deficiency.

The treatment that we will be involved in in Italy will be covered by the telethon in Italy that is financing the study. While in Italy we will be put up in a residence similar to that of Ronald McDonald House here in Toronto. The expenses we will incur will be the result of not having any income for the next year while we try and help our son through this disease. As you can imagine there will be many expenses that need to be covered at home as well as additional expenses we will incur while living in a foreign country for an average of six months. We have no idea what the result will be with the gene therapy. We do know that we will have to return to Milan, Italy approximately four more times once the study has completed. If the therapy does not work, Parker would have to be placed back on PEG-ADA which is extremely expensive to say the least. We are not paying for the enzyme therapy at the moment but are not guaranteed anything in the future. It is all of the unknowns that make it very difficult to place a dollar amount on how much this battle with SCID will cost. We do know that we will get through it with the love and support we have gotten and continue to get from our families and friends.

Again we would like to thank the Toronto Star for all of their work with this article. We were so pleased after reading it this morning. I don't think we thank the nurses and doctors at Sick Kids in Toronto nearly enough. The work that they do there is truly remarkable.

Thank-you for taking the time to visit our site and learn more about this disease. We hope that everyone will continue to visit regularly to track Parker's progress as he beats this life threatening disease.