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, May 11, 2007

Testing 1, 2, 3




This week has been predominately testing. Sebastian has had 2 to 3 different tests each day and we've spent a lot of time at the hospital. Luckily, for each appointment someone has helped us get to the right place and explain to the particular doctor why we are there. Sebastian has been doing great with each test and so far the results have been good. We learned that Sebastian will still need his IVIG infusions for at least a year after this treatment and he won't be able to attend school for about a year. That was unexpected and sad news for us, but it's the long term we have to focus on. Although, for now, we have to take each day at a time. After Sebastian's appointments on Thursday, we went into Milan for the afternoon and early evening and did some more sightseeing. The highlight for Sebastian was getting to see a castle that was built in 1368. Once Sebastian stops taking his shots we won't be able to take him out, so we're trying to take advantage at this time to get out and about.