Not long ago, I started following some press about an adorable tween named, Maddie, from Lawndale, NC, who is living with Behçet’s disease, and I’m just smitten!
At the ripe age of just 12 years old, this little, but fiercely empowered girl is refusing to live her life on the sidelines. And along the way, Maddie has not only become her own health advocate—she’s winning hearts and raising awareness about her condition.
In case you’re not familiar with Behçet’s disease, which is not contagious, it typically strikes people in their 20s and 30s and is thought to be genetically passed on from parents to their children. After exposure to something in the environment, like a virus or a toxin, a genetic key unlocks causing the body to attack itself, triggering acute inflammation of blood vessels.
What’s alarming is that it can attack just about any part of the body where blood flows and causes transient and/or chronic symptoms similar to arthritis with stiffness, pain, and inflammation of the joints. Additionally, it can cause headaches, mouth and genital lesions, vision problems, and debilitating fatigue.
Really?! Yes. Really! It’s just not fair—especially for girls like Maddie.
And to make things worse, treatment for Behçet’s disease is limited and requires medical care, which includes the expertise of an informed rheumatologist.
No doubt little Maddie is my new hero, but I also wanna give a big “atta girl” to my OTHER hero, Maddie’s mom, Mandi! What courage she has to boldly care for her daughter—and son, who also lives with a rare disease. There’s no question that Mandi has raised her girl, “right!”
I think about Mandi sometimes and wonder what it’s like to have two children who have required countless doctor visits, medications, emergency trips to the ER, and hospitalizations. And yet every day, she marches on, setting an outstanding example for not just Maddie, but for every mom.
And now, I want to hear from you this #NERVEmber! Are you a mother caring for a child with a rare disease? How do you stay emotionally and physically strong for your child—day-in and day-out? How do you get through the dark days and create special moments with your child? Please share your success story with me and other mothers who so desperately need some inspiration!
