Twenty-four years ago, I would have never predicted the journey we would face with our daughter Becca, who was born with a severe form of Noonan Syndrome.
I remember sitting at my first Noonan Syndrome Conference back in 1998 when a bunch of the parents were talking about sharing our stories and reaching out to raise awareness about this little known syndrome. They had recently done a letter writing campaign to Oprah, but to no avail. I sat listening, too shy to speak up, and then thought to myself, it is our own individual stories that would make the difference. The early days of Becca’s life I had kept a journal, writing the deepest thoughts and a few of the pieces of those snippets of my writing would be shared. But I was just a mom, not a polished writer– just writing to cope with extraordinary circumstances and challenges.
Over the years, I wrote many times, stepping out of my shell to tell Becca’s story, the story of a remarkable young baby who defied the odds to never give up despite the severity of her Noonan Syndrome. She did not give up, I took lessons from her and kept fighting and sharing.
Her story would be told many times over. In newspapers, parenting magazines, in First for Women Magazine, the Disney Adventure Magazine for her volunteerism, the People Magazine for Small Angels who Care. But this mom was still fighting, people saying she needed to write the story. But in 2006 my writing of the long procrastinated story was published, winning the Mom’s Choice Award for Best Non-Fiction and Most Inspirational. Tiny Titan, Journey of Hope. Becca’s and our family’s story of our journey with her rare form of Noonan Syndrome and her inspiration of the next chapters.
But the highlight of telling our story was when I was approached by Families USA to write Becca’s and our family’s story for the leading Health Care Advocacy journal in 2012-2013, Health Affairs over a year ago. A year-long project to write at a professional level as I am just a mom on a mission stretched me far beyond my comfort zone. It was published in September 2013. I was just a mom telling a story, breaking through the professional glass ceiling. I do not have my MD or PhD. I was just a mom who wanted to raise awareness about Noonan Syndrome– but also the catastrophic costs of complex healthcare.
I write this to share that there is power in our stories of our kids, adults and families living with rare disorders, and through the written word, they teach, inspire and raise awareness far beyond what we can ever imagine.
The Health Affairs article:
And Health Affairs Companion article to help connect the dots: