Tag Archives: awareness

Have a Heart Giveaway!!!

February is Have a Heart Month, to raise awareness for Marfan syndrome. 1 in 5,000 people have Marfan or a related disorder, but only about HALF of those know they have it. Since, with proper treatment, people with Marfan can live to a normal life expectancy, it’s imperative to get the word out about Marfan and its symptoms.

I’m excited to be able to host a giveaway in honor of Have a Heart Month! Larie Beck is a mother to a child with Marfan syndrome and we met several years ago via an online chat. Besides being a homeschooling mother to two and an active NMF volunteer, Larie makes beautiful jewelry!

Larie has created the Have Heart necklace specifically for this giveaway. This one of a kind necklace features 3 hammered, silver hearts dangling from a silver chain. It is accented with fire polished, red crystal beads, red glass heart and seed beads. It measures 11.5 inches from the clasp to the tip of the dangling hearts and is finished off with a magnetic clasp. (length can be shortened before shipping if the winner requests).


There are 3 ways to enter this giveaway, which is available to US residents and runs through Feb. 21st.

1) Visit Larie’s Etsy shop and comment with one other item that you love.
2) Visit the National Marfan Foundation’s website and comment with one thing you learned about Marfan.
3) Tweet about this giveaway (just once) and leave me a link to your tweet.

You MUST leave a separate comment for each entry. The giveaway ends at 11 pm PST on Sun. Feb. 21st. A winner will be selected using a random number generator. Make sure you leave a valid email address so I can contact you. The winner will have 48 hours to respond, at which point I will choose a new winner.

Also, Larie is donating a portion of the proceeds (up to 100% for some pieces!) for each heart piece sold during the month of Feb. to the NMF.

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CHD Week: Cora’s Story

Today I want to talk about a little baby named Cora, and what she’s doing for babies all over the country who haven’t been born yet.

When Cora was born, she was perfect. She had a great Apgar, a mom and dad and extended family who adored her. By all indications, she was a perfectly healthy baby. But on Dec. 6th, 2009, Cora died while breastfeeding. She was only 5 days old. The coroner determined that Cora died from an undiagnosed congenital heart disease (CHD).

It was after this tragedy that I met Cora’s mother, Kristine, on Twitter and I’m proud to count her a friend. I’m in awe of Kristine. She has channeled her pain into creating the organization Cora’s Story. Cora’s Story lobbies for pulse oximetry tests to become standard for every child. They are a quick, inexpensive test that checks a baby’s oxygen levels, which can detect a CHD. Even if the pulse ox is not standard in your state, you can (and should) still ask for the test to be performed on your child between 24-48 hours after birth. I had never even heard of this test before talking with Kristine.

Why am I telling Cora’s story to all of you now? This week is Congenital Heart Disease Week. Did you know that CHD is the #1 killer of babies? Here are some other CHD facts you might not know:
– Between 1 in 70 and 1 in 100 babies are born with a CHD of some kind.
– This makes it the more prevalent birth defect.
– Many CHDs can NOT be detected on the 20 wk ultrasound.
– There are over 30 kinds of CHDs (also called congenital heart defects) known, though not all of them can be detected with any of the various types of equipment currently available.

So, what are some things that you can do to help?
– Tell everyone expecting mom you know to request a pulse ox test for her newborn!
– Blog about CHD Week and link up your blog post on Kristine’s website.
– Add a CHD awareness button to your blog.
– Check out Baby Dickey’s website for a list of other ideas (and a giveaway).
– Become a fan of Cora’s Story on Facebook.
– Send a free e-card from Punchbowl! For every card sent during the month of Feb., they’ll donate to the Children’s Heart Foundation.

The more awareness we raise, the more babies we can save!

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