I have talked to so many about my need to do something. To feel like I am making a difference, somehow, to someone. I make a difference everyday to my son, but I want to reach further than that. Than a friend mentioned something idly on my facebook and the lightbulb went off. Bring awareness. I'm a chatty person (some may say a big mouth lol) and I can totally do this.
Did you know that there are over 7,000 rare diseases known in the United States and that over 25,000,000 (probably closer to 30,000,000) people have one? What makes a rare disease, well, rare is when it impacts less than 200,000 people. So less than 200,000 documented diagnoses. While it is debilitating to receive a rare disease for yourself or a loved one, it is even more debilitating to be in the massive group of the undiagnosed. Those individuals who seek an answer every day of their lives.
I don't think I know anyone who hasn't heard of autism, cerebral palsy, down syndrome, muscular dystrophy, etc. Not discounting any disease or disorder, it is those that most have never heard of that need attention to. There are parents and patients struggling day in and day out and hearing over and over "you have what? I never heard of it" - from friends, family, coworkers, and worst of all - their medical staff.
Let's CHANGE that. For one second to humanize something, to bring eyes to it, awareness, education, research, treatments - we can change this world one life at a time.
As luck would have it, February 29, 2012 is rare disease day. So I am going to start the month with a rare disease that isn't so rare to me. One I can discuss without much research. One I can highlight families in because I'm part of that family. This month, we learn about Angelman Syndrome and those amazing people who have flown into our lives and hearts, on the wing of an angel. If you have any suggestions for a disease/disorder we should focus on please, email me. MelissaW01@aol.com - I am available anytime.
To my friend Neta - thank you for pulling the plug that lit my thought lightbulb :-) This is definitely something I can do. My amazing son who lives with a rare disorder daily, you are a blessing to everyone whose life you touch. Thank you for choosing me to be your mommy. My daughter, you are such an important part of this family unit we have. The love you and your brother have for one another takes my breath away and puts tears in my eyes. Thank you for becoming such an amazing young lady. And to everyone else - thank you for the support, kind words, butt kickings when needed, etc. - I wouldn't be standing without you!