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.

Wednesday, August 29, 2007

A Bit More Time


We had expected to go back to Milan today, but our trip has been delayed, the results for the new batch of medicine are not yet ready. We now hope to get the results in mid-September.

Sebastian will not be starting kindergarten, because we have agreed along with the doctors that we do not want to risk him getting sick. This summer Sebastian has been able to live a pretty normal life, he attended summer school and went to parks and interacted with other children, but we now need to start being more cautious again as Flu season approaches. He is so anxious to play with other kids and have friends, it is great to see him introduce himself and get so excited to interact with them. It’s difficult to take that away from him, although we have to just keep looking to the future and concentrating on his health first and foremost. The rest will come and with Sebastian’s great personality, he won’t have any trouble making friends later on.

Sebastian continues to talk about Italy, usually as a plane flies overhead. He asks when we will be returning and when he will see his friends. We’ll write another update as soon as we have more news.