May 18, 2010

Hoping for Hannah

Hannah and Bertrand hanging out together at the NIH last year.

Hannah is Bertrand's friend from Texas with Gaucher's Disease type 2/3 (a lysosomal storage disorder). Hannah is currently in the pediatric intensive care unit (PICU), seizing from a bronchial virus, pneumonia and possibly other complications. Her temperature is coming down and she may be improving but her situation is still not completely clear.

I am devastated. I feel so impotent. All I can do from here is hope--and hope that hope is enough. Everything in me wants to fly down to Texas to help with Hannah's siblings and do anything I can for her parents so they can be there with her and not worry. If only Bertrand weren't on ACTH! :( I know crying doesn't help anything but that seems to be all I can do.

For close to 2 years, Hannah's mom Carrie has been my lifeline. When I felt most alone in my life, Carrie was the one who stood with me and understood what I was going through. Hannah is almost a daughter to me, I love her so much! She is just shy of 22 months old and has had to endure more difficulty than any child ever should. She is beautiful, joyful and wonderful. And what she's facing--it's just not fair.

Hannah, I love you. Get well.


  1. Poor little bug - I can't even imagine. I hope she's better in no time and that she and Bertrand are able to hang out together again soon.

  2. I am so sorry to read that Hannah is very sick! I believe your love and prayers do help her no matter the distance.