Baby J, you will never be forgotten…

Baby J.  He wasn’t even 7 months old.  I emailed with his mom a few weeks ago shortly after he was diagnosed.  Now he is gone.   He had Gaucher’s type 2.  My heart is breaking for his parents, as it just happened so quickly.

I’ve been sitting here with Hannah leaning against me, watching the Wiggles, thanking whoever would listen that she is still here with me.  Thirty minutes, I have been trying to write this post, and in between my tears for J’s family and for Hannah, I just have a hard time putting my feelings into words. 

Being in the rare disease community, we have seen other children lose their battles and their lives to these diseases.  But this is the first time that I knew that Joseph was alive and fighting, and now he is gone.   Does that make any sense?  I don’t make any sense.

This has completely shaken me, literally.   I’m not naive…I see the progression of this disease in Hannah, and now with J…argh!   I don’t even know what to say.   I can’t seem to think of anything else right now.  I don’t know what to do.


  1. Oh, Carrie! I am so sorry. :'(

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  2. heather says:

    hugs and kisses…

  3. It’s absolutely natural to feel this way. When I read your update on Facebook I not only felt for that baby’s family, but also knew you would be going through your own grief and uncertainty. Take care, Carrie, and try not to let this stop your fight. I know it’s easy for me to say don’t give up or stay strong, but those are just hollow words. Take the time you need to process, think and grieve then move forward and do what you think is best.

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  4. My heart breaks for you and for Joseph’s family.

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