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.

Monday, May 05, 2008

Glad to be back in Italy


We arrived in Italy safely and have settled in nicely. We flew Lufthansa (great airline) from San Francisco to Frankfurt, Germany and then to Milano. Considering the length of the trip, it was uneventful, and Sebastian did extremely well. Most importantly, we all stayed healthy, which seems like a miracle given the number of people coughing on the planes. We are staying in the same village and same apartment complex as last year, but we're in a different building and apartment. Famed architect Mario Botta (designer of the SFMOMA) is building two beautiful office towers across the street from us and Sebastian is enjoying watching the workers and the cranes during the day. Although we have been studying Italian, everyone speaks very quickly and it's still difficult for us to understand. Even with the language barrier, it's been an easier transition, since we are now familiar with things here. It feels like our home away from home. With the 9 hour time difference, we all have some jet lag. It'll take about a week before our bodies are completely adjusted. Sebastian will go into the hospital tomorrow for his first procedure. He will have a central line surgically placed on Wednesday, which will be used in the future to access his central vein. This will stay in for 1 - 2 years. We'll spend two nights at the hospital, and depending on how he does, we'll come back to the apartment on Thursday or Friday. We're a bit nervous, but it will give us an idea of what to expect during his time in isolation when he has the gene therapy treatment. We will plan to post another update in a week and will let you know how the surgery went. As always, thanks for sending positive thoughts our way.