Every day is a day to care, but tomorrow the world joins together to do just a little more.
Care about Rare.
That’s the slogan for Rare Disease Day. A rare disease is any disease affecting fewer than 200,000 Americans. There are nearly 7,000 such diseases affecting nearly 30 million people. That’s a number that stops and makes you think…30 million. The very first Sunday Series I authored and published was about one such child, Ian Scher. (http://markbrodinsky.com/2013/10/13/the-sunday-series-begins-its-just-about-life/) Tomorrow Ian and millions of other children and families won’t be so rare, because they will be wearing blue denim ribbons in unity and community to bring awareness to their daily challenge of living with a rare disease.
Half of all those with rare diseases are our most precious resource, our children. And many go undiagnosed, or are misdiagnosed for years. Ian was just one of those for whom the doctors had trouble getting it right. It took nearly a decade to pinpoint what was causing Ian’s struggles. It turned out to be a rare motor neuron disease, a mutation of the VRK-1 gene, a degenerative muscular condition, best described as a child’s form of ALS. Like ALS, there is no cure.
Then there’s Elizabeth Gardner.(http://markbrodinsky.com/2013/12/22/the-sunday-series-10-with-mark-brodinsky/). Elizabeth has Tar Syndrome – Thrombocytopenia Absent Radius. Tar syndrome is a rare genetic disorder, affecting less than 1 in 100,000 newborns and characterized by the absence of a bone called the radius in each forearm. For Elizabeth, it’s meant countless surgeries, struggles and prayers, but Elizabeth is making her way in the world, surviving and even thriving.
Care about Rare. Tomorrow at Chatsworth School in Reisterstown, Maryland every child in the school will be given a blue ribbon, to show support for Ian and the countless others who are affected with a rare disease. With so many, so young, it’s every family member who lives this struggle every step of the way with their loved ones and who go the extra mile to make everyone aware. Ian’s twin sister Becca will make a morning announcement at school about rare disease day so all the students know why they are being given the ribbons and Ian’s dad Brian will be there to take pictures and lasting images of this tremendous show of support.
Another private school, where uniforms are the norm, is holding a fundraiser in honor of those like Ian and Elizabeth, where families are actually paying for their kids to dress down in jeans on Friday and wear the blue ribbons.
Care about Rare. Because it’s not easy. As it says on the website www.globalgenes.org: “There’s no class on how to be a rare disease patient. Many are thrown into the fold with little knowledge of how to make medical decisions for themselves or their loved ones. They haven’t yet unearthed the movement of advocacy, the importance of policy change, or decoded the large and perilous machine that is big pharmaceuticals.” But tomorrow, all over the world, the seventh annual World Rare Disease Day will attempt to bring light and unity into the lives of so many families who on many days live a dark and lonely journey.
Marci Scher told me Ian is doing well. She said she doesn’t know if there’s really any “better” to report. It’s understandable, as Ian lives every day with his rare disease. But Ian still keeps his sense of humor and his spirit. On the days he feels down, or sad, he tells his family, “he’s not done fighting and he’s not giving up.”
Either is anyone else. Only those who are truly rare in heart and soul can handle what life has handed them. To all those affected, thank you for the fight. Thank you for the inspiration. Thank you for being brave. Thank you for showing us the way.
Care about Rare.
Until next time, thanks for taking the time.
Author, It Takes 2. Surviving Breast Cancer: A Spouse’s Story
#1 Amazon Best-Seller