Hey, Mommytrain Riders, Let’s Love on a Mama Just Like Us

Love LivThe Backstory

Imagine you’re a few weeks pregnant with your second baby boy, and you find out you have a life-threatening form of breast cancer. You could go for the aggressive treatment and kill any chances of having babies again, or you can go with a modified chemo regimen, and try to survive the pregnancy with your baby and body intact.

Sharon Shimanovsky chose the second option. She went through pregnancy and chemo, and delivered a healthy miracle baby. Then she endured a double mastectomy, reconstruction, and 28 rounds of radiation.

The Twist

Sharon survived all of that. She was cancer free, had two healthy boys, and then found out she was pregnant with a girl. It was the best news. She got to have a perfectly normal pregnancy, cancer free. Her first daughter arrived safely. But soon Sharon noticed something was wrong. Baby Liv would choke and gag at every feeding. She vomited frequently, and failed to thrive. She missed major milestones like raising her head and rolling over.

The doctors sent her home with a feeding tube and no diagnosis at all. Later they learned the truth: Liv has a rare condition called Nemaline Myopathy. She will face breathing problems, severe muscle weakness, and will probably be unable to walk, especially after she hits her growth spurt as a teen.

The Journey

Because Nemaline Myopathy is a rare congenital condition, only 1 in 50,000, there’s not much research out there. In fact, so far, there’s no effective therapy or treatment at all. But we’re working on it. A Foundation Building Strength for Nemaline Myopathy is a group of people who work with scientists to find the most promising studies, and get them the funding they need. AFBS (A Foundation Building Strength)pays all its own overhead expenses, so that the money they raise can go straight to the best researchers out there, 100%.

So now, every year, Liv’s mama puts together her own LoveLiv fundraiser, to get as much money as she can into the AFBS projects most likely to give her daughter a better future.

The Party

And guys, this year’s LoveLiv event is going to be epic. Seriously, they outdo us. We’re going, and we would go even if it wasn’t for the very best cause we’ve ever heard of. It will be held at Star Eco Station in Culver City, which is cool all by itself. But they’ll also have award-winning bands, some of the best local eateries and bakeries in L.A., plus arts and crafts, bouncy houses, and tours of the animal exhibits! Bid on items at the silent auction, or just run around and buy tasty eats and play games! It doesn’t matter what kind of fun you have, as long as you keep paying into those beautiful, life-saving coffers for Liv and her mom.

Because really, guys, this could happen to any one of us. And we’d be right there loving on each other just the same. So let’s shine our Mommytrain light on LoveLiv this time. We’ll keep you up to date on all the easy ways you can help.

Save the Date: Mommytrain Descends on LoveLiv 2014

Date: May 18th

Time: 11 a.m. to 2 p.m.

Place: Star Eco Station, Culver City

xoxo,

Ana & Dani

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