I’m not a birthday person or a mother’s day person but for some reason I love Valentine’s Day. Maybe it’s the ubiquitous candy, although Halloween trumps V-day on that count and I still prefer Feb 14th. I think it’s because the kids get all giddy with their friends, talking about crushes and planning to send secret messages and letting their carefully constructed guards down for this one day when it’s ok to show that you’re vulnerable because you can always hide behind the idea that “It was just for Valentine’s Day.” Poor Maisy is devastated about today’s snow day, as she spent all night making 22 Valentine’s Day cards — one for each of her classmates plus an extra-special one for the new boy who moved here from Spain. Sweet stuff.
On the flip side, this day puts hearts front and center, and it isn’t easy to have that in my face. The heart is a muscle, and its failure is most often the cause of death for kids with Duchenne. At Charley’s last checkup, cardiac MRI revealed the beginnings of cardiac fibrosis (scarring). Scary stuff.
Today, we all have a chance to affect the speed at which new medicines for Duchenne become available. We can stand by idly while the bureaucracy grinds at a snail’s pace, or we can urge the FDA to take action NOW.
Please download this V-day card* and send it to the folks at FDA who hold our children’s fate in their hands. Their e-mail addresses are listed below the card. Once you are done, be sure to focus on the sweet stuff today. Come Monday, we’ll send these to Congress!
All my gratitude,
* To download the V-day card, right-click and save it or hold down and save. If you are using a Mac, hold “control” and then click your mouse.