Friends, I’d like to introduce you to someone who is going to take your breath away with her story: please meet Heather Von St. James. In 2005, Heather was diagnosed with pleural mesolthelioma and given 15 months to live. She had just given birth to her beautiful daughter, Lily Rose, three months prior. You can only imagine the cold horror and pain racing through her mama’s heart. The weight of such a prognosis seems too much to bear…but the catch? Heather decided she wasn’t going to die.
I’m going to let Heather tell you her story with her unfathomable poignant grace:
Heather’s story stops us in our tracks. Not just because she showed incredible strength and beat the odds. Or because she chose to flip what was handed to her and help others with her experience. But because it could be any one of us.
Heather was 36 when she was diagnosed. I am 36.
Even if our ages and young kid lives didn’t parallel so closely, her story would still matter to me. Rare disease can meet up with anyone one of us, at any time. In my own life, I have seen too closely the hurt rare diseases can wreak. I have had two friends struggle for years and months to sort a diagnosis for their symptoms. It was a painful, rough road full of endless doctor appointments, no answers, and continued misunderstood pain. Fortunately, both of these ladies are now healthy and well, but there is a third near and dear story in my life that ended far less well.
In 2012, my mother died of of intrahepatic cholangiocarcinoma, the rarest of bile duct cancer, which is itself a rare form of cancer. I cannot predict outcomes if doctors had matched diagnosis and treatment earlier. I cannot speak to things that are not. But I do know that awareness and knowledge can go a long way in making a difference.
That is why I fully support Heather’s work to become an advocate for Rare Disease Day, February 29, 2016. This is a day to raise awareness of rare diseases around the world. Rare diseases are a nasty beast. Not only must patients grapple with their diagnoses and all of their many-leveled implications, but they must also content with a general lack of understanding, support and knowledge as well. It’s rough road to have a rare disease.
So on Monday, friends, join Heather and me in supporting Rare Disease Day. Your voice, your interest, your understanding does matter. Anything you can offer the cause is appreciated. Follow along on Facebook and Twitter, cheering the efforts on.
Rare Disease Day is always celebrated on the last day of February, but this year holds special significance for me, being that it is on February 29. My mother was ridiculous in that she always celebrated half-birthdays with a vengeance. She was born on August 29, and so was only able to celebrate hers every four years. As it happened, she took a tremendous fall on February 29, 2012, one of her rare half birthdays, which proved to be the stimulus to her active dying process. She died two days later on March 2.
February 29 is a significant day for me. This year more than ever. It’s a significant day for so many. Please shout out some love with us on Monday for Rare Disease Day. It matters.
Thanks, friends.
First image credit: depositphotos.com, image ID:30161765, copyright:Syda_Productions
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Janine Huldie says
I have heard a bit about Heather and her story on another blog recently and appreciate you spreading the cause, as well as the reminder here today.
Meredith says
Thanks for supporting her here, Janine, and for caring about rare disease cause!