Raising Awareness...

Ok, so I've been quite busy this past week as I've decided that with things looking up I would raise awareness in honor of Silas as much as possible. Just a couple of hours after my last post the phone rang & my husband answered the call. It was congress woman Sandy Adams. She had called a bunch of Florida households to discuss the problems with our economy & government today. So for quite sometime my husband listened to this conference call, until I came into the room. I had an option to press 0 to be placed in line to speak to her for all to hear. I hit 0, but time ran out. I was transferred to a voice mail system to leave a message, which I did. I didn't bother to talk about my problem or what I'm going through because I feel to little to late for them to help me. We needed help now, not later! Our babies though lives & struggles need help to let the world know about Congenital Diaphragmatic Hernia. Let us save the one in the future from the grasp of CDH, & lets find the survivors answers & cures, & for those that lost their battle w/CDH let's honor them raising awareness.  

Oh, sorry about the rant & raving, but I just can't bare to think that anyone will have to go through this battle... It's definately not for the weak or timid, but then again I don't think anyone has the strength to get through this one. I have made this video for awareness of CDH:

2012 CDH Awareness - slideshow dvd

Well, just this past Thur. (approx. 2 days ago) the phone rang & to my surprise it was Sandy Adams calling my house & asking for me, Heather... Damn, for real. She called to tell me that she got my message & she reviewed the info I sent her & she will be looking for the kids with the wings in DC on April 19, 2012!! She is going to spread the word to the other politicians to support the bills for CDH!! Seems Silas is hard at work.. I believe that what I can do for others will be returned to me 10 fold.... I don't have any monetary funds; as a matter of a fact as you all know I'm in need of that right now BADLY... What I do have to give though hopefully someone will see a value to the others in what I do & grant my wish & prayers to help me financially.. Please Help Support the CDH bill .

On another note I found an organization that raises awareness for rare diseases. Silas was diagnosed with an unconfirmed case of Fryns Syndrome. The organization helps us unite 1 million people who support rare disease awareness. 1 in 10 Americans have a rare disease. 350 million people worldwide suffer from one of the 7,000 different types of rare disease. 95% have no cure... I submitted Silas picture to be processed & edited for R.A.R.E. Disease Day (Feb. 29, 2012) to the Global Genes Project. 

Now, that I've got Sandy's attention to the Cherubs. I need to now collect some of the items for CHERUBS H.O.P.E. (Helping Other Parents Expecting) Tote bag Program. I'm writing to companies to donate these products that they already make or sell. As for anyone that would like to help this great cause you can either let me know, or you can donate (right column of blog/ First Giving widget)

For those of you that would rather just purchase items & mail them to me, that's fine too. Wish List of Items Needed: Below is a list of items that we currently include in our totebags. Each totebag is different, dependent upon the items we have currently available.

Disposable Cameras

Baby Blankets (any material but wool)

CDH Baby Books

Button up newborn or preemie shirts

Small or preemie pacifiers

Travel packs of tissues

Chapsticks

Plaster Handprint and Footprint Kits

Baby Booties

Baby Hats

Small bottles of hand santizer

Small bottles of lotion

Small picture frames (for the baby's hospital bed)

Baby's first haircut holders

Small teddy bears

Gas Cards

Restaurant gift certificates (national chains please)

I guess the ONLY other news I have is that the other day I told you about Tiny Dream Shop that was going to be custom make a piece of jewelry to honor Silas for a Facebook Contest I won.. She messaged me today & here is the finished custom piece to honor Silas.