Sebastian's Space

This blog is about our son who has a rare genetic disease called Severe Combined Immunodeficiency (SCID). His form of SCID is linked to a deficiency of the adenosine deaminase (ADA) enzyme. Basically, Sebastian doesn’t have an immune system and is very susceptible to infections that wouldn’t harm healthy children. He is currently participating in a Gene Therapy trial in Italy.

Friday, March 28, 2008

Ritorno!


After much anticipation we have received word that we will be going to Italy at the beginning of May for Sebastian's treatment. We are very excited to be returning and Sebastian looks forward to seeing his friends. He won't need to repeat the tests that he did last year and the treatment will begin shortly after our arrival.

Since the last blog entry Sebastian has remained pretty much in isolation, and he has stayed healthy. He enjoys his home schooling and is learning all the things a normal five year old would. He is actually now doing math and workbooks at the first grade level and we are very proud of him. His favorite activities are family bike rides and a rigorous play session at a local park, unfortunately when we visit the park we have to make sure other kids are not around.

His mental acuteness and attention to detail is quite amazing and he is very social with the people he gets to see (some family, neighbors, and UCSF staff). We were very concerned that he would not know how to react around people he has never met, but he is quite the little conversationalist.

We are very excited to see everyone at the Hospital San Raffaele again. We feel very privileged to be able to have this opportunity and are very grateful. We will keep everyone posted when we arrive in Italy as to the next steps in Sebastian's treatment. Your thoughts and prayers are greatly appreciated.