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.

Tuesday, July 15, 2008

52 Days...


Good News: Things are really looking up and it's very likely that we will be taking Sebastian back to the apartment this week! On Monday his neutraphils were up to 1,300, and if tomorrow's blood test results are still up he'll be discharged on Thursday. We are very excited about this possibility. He will still be vulnerable to infections and we will basically need to keep him in the apartment, but at least we'll all be together.

Two dermatologists visited Sebastian last week and believe that the lesions are a reaction to a medication. He had been given a new medication to stop the growth of gallstones that were discovered when an ultrasound was done a few weeks ago to check his liver. They've stopped giving him this medication and his lesions seem to be healing. It will take some time for it to clear up. They took a sample of one the lesions to rule out a fungal infection and we should have the results later today. Neither of the doctors think it is a fungal infection and we hope they are correct.

Sebastian is excited that he will be able to leave soon. He has been a real trooper about staying in the box. When we imagined what it would be like in here, we thought that the hardest part would be just keeping Sebastian inside. We couldn't have been more wrong — we are very proud of him.