[evansmom]

Hi there,

Sorry to hear that your son is having to deal with this awful disease but so very happy that he is responding favourably to the ATG treatment. My son was diagnosed with AA in November 2007 at the age of 10. He was a non-responder to ATG and went on to have a successful unrelated BMT in June 2008. We were very lucky as we went from diagnosis to full recovery in 13-14 months. No one could give us a reason as to why this happened. All the usual testing for viruses came back negative. I firmly believe Evan's AA was not autoimmune in nature due to the total lack of response to immune suppression therapy. Perhaps he had short telomeres which, if I understand this complicated theory correctly, is kind of like a DNA replication error. I believe his AA was was a very slowly progressing disease, but it's hard to say for sure. Toronto's SickKids Hospital only started testing all AA kids for short telomeres just after Evan was diagnosed and treated with ATG. It is my hope that research will allow hematologists to accurately rule in or out autoimmune disease ASAP as the cause of AA so that precious time isn't wasted doing immunosuppressant therapies for non-autoimmune AA. These cases would go straight to transplant if at all possible.

I am a Registered Nurse as well and while many friends and colleagues wondered if that was a bad thing (as we may know too much) during our AA days, I have always believed it was a an absolute blessing from the point of view of medical understanding, knowledge of infection control and perhaps most importantly, the role of patient advocacy and the realization that no one is infallible, not doctors, not nurses.

Evan's complete journal start to finish is linked below. Feel free to visit.

Best wishes for complete return of health to your boy,