Comments on Sofia's CDH Story: I saw this today...

Jen, Don't let this upset you too much becaus...

2009-07-02T17:30:32.589-05:00

Jen,

Don't let this upset you too much because guess what - I have heard from too many of those professionals in the trenches who say this is critical!

Keeping my focus on the prize in the end - which would be higher survival rates as the result of others aware and financial support to medical research and support for CDH!

So many people don't see the big picture.

We got State Proclamations, we still are working on that. We have a Resolution in Committee - we are working on that. We will write bills for Medical Research for CDH and things related to - and we will continue - this just started this not long ago - look at how far it has come in such a short period of time!

Giving credit to all the families just like yours!
Elizabeth

Jen, I am so sorry. What a jerk. I posted a resp...

2009-07-01T22:26:22.983-05:00

Jen, I am so sorry. What a jerk. I posted a response to his article as well. Unbelievable. I follow your blog through meeting little Kinley and think promoting awareness of CDH IS critical to increasing funding and such to ensure less children will die from this. You are right to be fired up!!!

I never knew what CDH was until I started blogging...

2009-06-29T09:43:49.794-05:00

I never knew what CDH was until I started blogging. Now I follow a few kiddo's and am just amazed with the stregnth in the parents and the babies.

I would be apalled as well. I think that unless you fully understand what these little fighters go through, maybe the journalist should keep their writing to themselves.

Goodluck in getting the word out. Remember, someone always listens to the squeaky wheel.

Such a great post, Jen! You are right, CDH picked ...

2009-06-26T08:39:34.787-05:00

Such a great post, Jen! You are right, CDH picked you..but it picked you for a reason. I cannot believe how passionate you are about everything that you do. As a mother myself, (to a toddler now, geesh!) I understand the definition of "passion" like I never have before. I can see how passionate you are about motherhood, Sofie, and CDH. I am amazed everytime I open your blog and read about another idea that you've had or an idea of others that you are so strongly involved in. The blog in general, Sofies infospot, the letters for CDH...heck, even the research you've done for this post! You do everything 100% and it is commendable. I know it is cliche but God only gives you what you can handle and you have definitely taken a horrible and nasty defect and made the best of it. Keep up the good work.

Hi Jen and Miss Sofie. I too want to disappear fro...

2009-06-26T08:07:55.899-05:00

Hi Jen and Miss Sofie. I too want to disappear from the cdh world but like you we have been given not only tradgedy but a gift and that is to share our story to the world and bring to light this fatal birth defect. You are right our babies DO deserve a normal life....however I realize this may never be possible. I know that we just simple have to live in the moment not knowing how long we will have together. It is so important for us to share and give hope to expectant parents. Thinking of you guys and also praying everyday.

I also was upset about that article but you know what? That guy has NO clue about cdh. So many have brought the "bad" side of cdh to the light meaning drama. It is so sad to me that they have lost focus on what is really important.

~Terri and Ava
http://avaslifewithcdh.blogspot.com