My husband and I have four wonderful sons! Two of which have a rare genetic disease called Severe Combined Immunio Deficiency Syndrome - (SCIDS) or as most people understand it as "the bubble boy" syndrome. This is a rare genetic immune system deficiency.
This is NOT AIDS or HIV.....when my son was born (in the late 80's) this is automatically what people thought. SCIDS is an immune system problem but were HIV depletes a healthy immune system...SCIDS kids never had one to begin with in their life.
I am blogging to shed light on this subject. Back when my first son was born there was no one to reach out to....there was no physical person who understood what a parents fear was and how to handle this diagnoses. Oh there were doctors to explain the condition.....but no one to say "Hey, I walked in your shoes....it is tough....but you CAN do it!"
So this blog is to reach out and say I understand.....I know how you feel.....and it is horrible and you feel like this is the end and there is no light in the tunnel....but this is just NOT true. I have lived through 23 years of this process...my son was one of the first boys to have had a mismatched bone marrow transplant (more about this later). But I am here to tell my story, explain all the confusing information and to educate others about SCIDS.
No comments:
Post a Comment