In honor of Rare Disease Day, which is tomorrow, February 28th, I’d like to talk about Ben on the blog today.
You get it, right? February 28th is a day away from another rarity, Febraury 29 during a Leap Year. I figured, but thought I’d work that out for you. 😉
Ben has Menkes Disease. Menkes is very rare. You can read all about it and Ben’s story over at The Menkes Foundation. If you’ve never googled the disease, it’s a doozy. The prognosis for individuals with Menkes is poor; death can occur within the first decade of life. And here is our Ben at 7 years old.
I titled this post Sunshine on Legs because a friend recently referred to him as this. And she nailed it. He truly is a light. A brightness. He is hope. In the beginning of his life, after the diagnosis at six weeks old, I had very little hope. Now, he is living proof that you should always keep hope alive no matter how dismal the prognosis or dire the situation. He is my Copper Luck and Hope.