Daisy and I went to the library today. I was on one side of the bookshelf, looking for the perfect books to take home while Daisy was on the other side working on a puzzle. Out of nowhere Daisy calls out, “Mama- why did Ezra have to die?” The father/ daughter duo who were sitting on a couch reading glanced over at me… I quickly moved to Daisy’s side and held her hand. I find it interesting that Daisy continues to ask why did Ezra have to die- which is a very different question than “why did Ezra die?”. She’s not interested in the rational, medical reasons why his body couldn’t support him any more. She wants to know WHY THE HELL her brother is not here. Why does our family not have a baby any more to hold and snuggle with… why does she not get to have a sibling? On more than one occasion Daisy has said, “Mama! I know! You can just grow another baby in your belly!”

If only it was that simple, my dear…

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One week ago, our new community in Maine came together to participate in the very first Hearts For Ezra event. Hearts for Ezra was born out of an idea our fabulous friend and pediatrician, Dr. Kieran Kammerer had. Together we have created this foundation with the mission of spreading awareness about Spinal Muscular Atrophy and raising funds to put towards promising research in the hopes of one day finding a cure. We don’t want our family’s story to be any one else’s story. Our belief is that with awareness comes money and money brings us closer to a cure.

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Our kickoff event was a HUGE success! We had several performances for children- including an amazing circus performer! There was a silent auction filled with beautiful gift baskets, handcrafted items and generous gift certificates. Jon James, from a local radio station was our MC and we had over 40 volunteers- including high school students who were more than happy to dress up in Tigger and Winnie the Pooh costumes.

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The children enjoyed face painting, balloon animals, arts and crafts and the most incredible bake sale I’ve ever seen. Ethan and I were blown away by the turnout- and by the incredible time and energy our planning committee put into making this such a success.

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So many amazing things have happened since creating our foundation… Senator Collins sent us an American flag that had been flown over the US capital in honor of Ezra. WHAT? Let me repeat that… a flag was flown over the US capital in honor of our sweet beautiful 8 month old boy.  And as if that was not enough- Governor LePage created 2 proclamations. The first one was that March 10, 2013 was Hearts For Ezra Day and the second one stated that August 2013 is Spinal Muscular Atrophy Awareness month. He also wrote us an incredibly heartfelt, touching letter, which we will forever treasure. We have had articles in the newspaper (http://www.pressherald.com/news/after-son-dies-couple-fights-for-a-cure_2013-03-04.html )  and there were a few news stories about Ezra (http://www.wgme.com/news/top-stories/stories/wgme_vid_15796.shtml ). It is amazing the attention our little fundraiser has gotten- and the publicity certainly helped make the event the success it was… we raised over $13,000!!

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We have had a week now to process this amazing event, and we feel a strong responsibility to put this money to the best use possible to further the mission of the foundation. Ethan and I were talking last night about the event and all that has transpired in the 6 weeks since Ezra died. I honestly have no idea how we are doing this, how we did this. We had a planning meeting one week after Ezra died.  The event was scheduled well before Ezra got sick and it has honestly been helpful to focus our energy and attention in a positive way. I described to Ethan that I feel like we’ve had to become reluctant advocates for SMA. Prior to Ezra being diagnosed with this disease, there have been lots of other causes I have felt drawn to supporting. I served on the board of Prevent Child Abuse NH. I’ve participated in Relay For Life events to raise money for the American Cancer Society. I’ve volunteered with the Humane Society. These are causes I’ve sought out and picked to spend my time and money supporting. SMA found me- found our family- found our son. I did not ask for this cause, in fact I had never even heard of this disease before learning that it would kill our child. Which is EXACTLY why this cause is so important…

1 in 40 people are carriers

1 out of every 6000 babies will be diagnosed with SMA

*Stats from Families of SMA (http://www.fsma.org/FSMACommunity/understandingsma/quickfacts/ )

And so, we’ve been handed this responsibility to spread the word… and so we will. For Ezra, for Sullivan, for Brooklyn, for Jacob…

xoxo