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, April 30, 2008

Golfing "Fore" Parker

Last year when we were in Milan, we met a Canadian family whose son has the same condition as Sebastian. They'll be in Italy for a short time for their son's annual follow up and we look forward to seeing them again. They are having a golf tournament to raise funds for their son. Anyone who has had an ill family member knows how costly it can be. If you reside close by Ontario Canada or are in a position to sponsor a hole please read below:

Date: Sunday June 1, 2008 with a 1pm shot gun start
Where: Four Seasons Golf Club
Price: $125 which includes 18 holes of Golf
(scramble format, 4 players per team only)
Dinner only: $55.00 per person

For more information, to buy or sell tickets, help with this event or sponsor a hole, please e-mail: golfingforparker@gmail.com

More information can also be seen on Parker's Blog

Sunday, April 06, 2008

Six.


Today Sebastian turned six years old. We all had a nice day. In the back of my mind I was thinking this is all possible because of talented scientists and doctors who have dedicated their life's work to understanding how our bodies function and coming up with cures for very complex ailments. Thank you—Grazie.

There is a beautiful, two year old Canadian girl with the same condition as Sebastian, who we have been following for some time. Take a look at the video her mom made.