Comments on: Cerezyme Shortage and Genzyme update

By: Karen Gill

Karen Gill — Fri, 19 Jun 2009 00:48:07 +0000

Larry-

You are an amazing human being. This is indeed proof that angels do reside here on earth with us. Thank you on behalf of all of Hannahs friends!!

xoxoo

By: Kelley

Kelley — Thu, 18 Jun 2009 23:00:39 +0000

I agree — Larry, you are a big person with a good heart.

By: Deborah

Deborah — Thu, 18 Jun 2009 22:00:58 +0000

What a beautiful offer Larry :’( This verifies for me that there truly are still wonderful people in this world.

By: Larry Steinhouse

Larry Steinhouse — Thu, 18 Jun 2009 20:12:59 +0000

I also suffer from Gaucher’s. I have the lighter form and my symptoms came on when I was in my late 30′s. I have my infusion tomorrow and I know that I wont have another for a few weeks. I am sure that I will be able to deal with the fatigue and pains that I will feel, but if our doctors will agree I have 1600 units that I will gladly give up for your daughter’s health. I am not sure if we can co-ordinate it quickly enough but my email is larry@steinhouse.net.

By: Big Cousin M

Big Cousin M — Thu, 18 Jun 2009 18:10:14 +0000

Wow. This is an odd and terrifying wrinkle. I’m very sorry that the world is adding another obstacle for you and your family. Keep staying positive and I hope this works out.

By: Boston Globe Article – Genzyme plight leaves patients uneasy | Little Miss Hannah

Thu, 18 Jun 2009 13:44:52 +0000

[...] The article came out that I was interviewed for yesterday afternoon. I’m so glad to see the neuronopathic Gaucher’s disease is finally getting some awareness, but I wish it was not because of the Genzyme plant shutdown. Again, here are my thoughts on the situation just in case it wasn’t clear in the article. [...]

By: heather

heather — Wed, 17 Jun 2009 23:59:21 +0000

i think too it is great that you have created such wonderful and meaningful connections with the people at the company as well! I hope it helps…