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 21, 2007

More Tests — Then Walking






In between tests at the hospital we have been exploring Milano by taking the Metro. It is a large city and we are fortunate to be in a place that has such rich history. Sebastian is learning about castles, sculpture, paintings, food, etc. Our Italian vocabulary is growing day by day and it is a beautiful language.

The track record at the hospital we are at is very impressive for Sebastian's conditiion and we feel happy to be here. We hope that all the tests will allow him to undergo the gene therapy procedure. We should know in about three to four weeks.

In this post you will find some shots of our walks. We continue to live very simply -eating a lot of fresh vegetables, pasta and salads. Most of the people dress very "urban", jeans, a t-shirt and an un-designer pair of shoes—like track shoes. That does not mean you cannot find people dressed to impress, but it is not the way most of the city choses their attire. We find ourselves fitting in pretty well except when the locals try and ask us a question.