Saturday, February 27, 2016:

National Rare Disease Day

If you've been following along, you know that just under four weeks ago, we welcomed our third baby boy, Cameron, into the world!  We were so excited to bring him home to meet his big brothers, Liam and Finn!

As luck would have it, everyone had head colds when we came home.  And while I was certain is was just part of having a baby born during cold and flu season, a familiar anxiety started to creep into my mind- likely intensified by the pregnancy hormones!

Our home was built in the 1920s and we know that there is asbestos behind the walls and insulating the pipes.  I'll never forget the day we had our home inspection.  The inspector looked into a hole in our basement wall and pointed out the whispy insulation that wrapped around the old and obsolete pipes deep within the walls.  With 100% certainty he identified the insulation as asbestos.

While he assured me that I had nothing to worry about so long as the asbestos was not disturbed, I had moments of panic at the idea of raising a family in a home with asbestos.  I was 25 weeks pregnant with our second son and I couldn't stop thinking about unintentionally exposing my children to this dangerous substance.

While I am confident that we have rectified the asbestos situation, from time to time, when my two year old can't get over a head cold or when we all have a cough, I wonder...."what if?" and I'm reminded of wife, mother, and survivor, Heather Von St. James, and her scary diagnosis with Mesothelioma, a rare disease that affects the lining of your internal organs- most commonly, your lungs- caused by exposure to asbestos.

She was exposed to asbestos as a young child.  Heather's father worked in construction and was often covered in the drywall he worked with daily.  The dust that covered his jacket, a jacket Heather loved to wear herself, was laced with the microscopic asbestos particles that cause mesothelioma.  Little did she know she was breathing in the harmful particles that would later compromise her health.

Just months after the birth of her daughter, Heather was diagnosed with this rare disease and given 15 months to live.  However with effective treatment and the care from exceptional doctors, she is now a mesothelioma survivor.  Learn more about her story here.

I'm sharing this post because Monday is National Rare Disease Day- a national campaign to raise awareness of rare diseases, including Mesothelioma.

Please take a moment to look at the infographic below and to learn more about Heather's story and Mesothelioma.

I'm using my blog and my voice to build hope and awareness.


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