Mom Spreads Awareness For SMA After Her Worst Nightmare Came True

“You can’t imagine loving somebody any more than you do your partner, and then you give birth to this baby and you’re just like… my heart just like…EXPLODED!”

Emily Bessey is the beautiful mom of angel baby Ezra and I am honored to feature her as a Motivating Mother today.

MOM SPREADS AWARENESS FOR SMA

Ezra was perfect in every way.

With his cute red hair, big eyes and sweet smile, Emily and her husband, Ethan, fell in love with their little guy.

“Those first few months I noticed his head wasn’t really gaining control, and he wasn’t really putting pressure on his feet…You know like little alarm bells going off,” Emily mentioned.

But it wasn’t until his four month well child check-up though, that their life changed forever.

“We sat across from a doctor who gave us the worst possible news,” she says.

The doctor came in and diagnosed Ezra with Spinal Muscular Atrophy, also known as SMA.

Emily declares, “It was our worst nightmare coming true.”

No mom EVER wants to hear those words – as it is the number one genetic cause of death for children under two in the United States.

“[Emily and Ethan] made the decision that the quality of the days they had with Ezra were more important than the quantity and worked hard to surround both Ezra and his big sister, Daisy, with love.

Over the next few months, they noticed that Ezra’s breathing became more and more labored and his ability to move his arms and legs began to deteriorate. They had a feeding tube placed in his belly because most SMA babies eventually lose their ability to swallow.

Through all of this, Ezra remained a bright eyed, alert, happy boy.

Right up until the day he died on February 5, 2013, Ezra connected with people with his sparkling eyes and adorable smile. Ezra David Bessey was 8 months and 6 days old when he died.” {Quote from Hearts For Ezra}

After Emily and Ethan lost their sweet baby to SMA, they now raise awareness of the disease through their Hearts for Ezra Foundation. You can hear their story at sma.counsyl.com or watch this video below.

August is National Spinal Muscular Atrophy (SMA) Awareness Month and Counsyl, a DNA testing and genetic counseling company, would like to help spread the word about Hearts for Ezra and carrier screening.

Through the Foresight™ Carrier Screen, couples can detect if they are carriers for serious genetic conditions, including SMA, before getting pregnant.

What a blessing it would be, to KNOW if you and/or your partner is a carrier so you can plan accordingly, to help your babies get the help they need, even before they are born or diagnosed.

Thank you Emily, for being so brave and sharing your story with us. You can check out Hearts for Ezra on Facebook. And read more from our Motivating Mothers here.

This is a sponsored conversation written by me on behalf of Counsyl. The opinions and text are all mine.

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