The CGD Café

To all,

 I felt I needed to post an entry one last time.  My  son Quentin passed away January 28th.  He was exactly 18 months old.  He developed an infection in November.  The bacteria was  burkholderia sepia.  Our infectious disease doctor is one of the best in Atlanta but he had never fought this bacteria before.  In November they treated the infection with IV antibiotics and his labs got better.  He felt better for about 2-3 weeks.  It was the happiest time of our lives.  For the next month or so he was in and out of the hospital.  All the blood cultures kept comming back negative.  They ran every test imaginable but they couldn't find anything definite.  After consulting with the NIH Dr. Malech told our doctor that he was confident it was the Burkholderia.  He told him about what a difficult bacteria it was to fight how it must be overtreated.

I never, never, never, thought CGD would take our son from us.  There are so many positive things we read about how with all the new medications and gamma that it can be controlled.  I always thought if he gets an infection we get him into the hospital get him on antibiotics and it would clear up.  Quentin, as many of your children probably are was on many antibiotics routinley.  He got gamma interferon three times a week.  It wasn't enough. 

I want everybody to always remember that the fight never ends.  Don't ever get complacent.  Of course I feel like if we could have gotten to it sooner he might still be here.  There is no way to tell.  If your children are doing well embrace and enjoy it, but don't allow that to make you forget how serious these infections are.  I recommend if anyone's children grow out Burkholderia sepia that they contact the NIH immediately and fight extrememly aggressivly. 

My heart is broken into a million pieces and I know that everyone dealing with this disease loves there children or your parents love you the way I will always love my son.  Please take care of yourselves and of them and love them with everything you are every day you are blessed to have them in your lives.

I would also like to thank Mary for doing what you do.  You are an inspiration to all.  Thanks

Scott Sopousek, forever Quentin's Dad