My day job is being at home with a two-year-old daughter, Alanis, who’s medically fragile—she suffers from spinal muscular atrophy (SMA), which is caused by a genetic disorder. In this role I’ve become a lot of things that I never expected: a nurse, a respiratory therapist and a physical therapist, to name a few. I’m also an instructor at Madison College and I hold a PhD in material science engineering.
My most memorable caffeine is the first coffee I had as a college student in Puerto Rico, which I hated. Coffee was a means to an end—a way to stay up late and get my work finished. When I first moved to Madison, I drank hot beverages to try to stay warm. I started with hot chocolate and worked my way to coffee. Now I can say that I truly enjoy coffee, but I prefer it with a lot of milk!
My current caffeine of choice is usually a latte. At home I make it with a small espresso-type pot; if I’m traveling or at work I use a French press.
The person I’d love to share a cup of caffeine with is Ellen DeGeneres. I’d love to tap into the power of her voice to let people know more about SMA. It’s much more common than people know—one out of every 6,000 children will be born with it and one in 40 people is a carrier. In fact, if you combined all rare genetic diseases, the childhood death rate is higher than it is for cancer. There is a gene therapy that’s been shown to help SMA, from a company called AveXis, but to date they’re only accepting qualifying children who are under six months of age, and Alanis was too old by the time we learned about it. We are very close to a cure for this and maybe Ellen could help us get the word out! If you’re interested in learning more, curesma.org is a good place to start.
World problem that could be solved with the right amount of caffeine: My dream, not surprisingly, would be to cure SMA. But in general, I’d also like to see people coming together and taking the time to connect and enjoy the moment. I’ve certainly learned to do that more as our family has navigated this disease.
Meet Darilis’s daughter, Alanis, and her brother, Alex