February 28 was Rare Disease Day—a brilliantly cheerful day that garners about as much joy and partying as St. Patrick’s Day in Boston or Mardi Gras in New Orleans. Okay, just kidding! However, it is interesting to me as a mom with a child who has a rare disease that there is an emerging collective voice for those who are “rare but equal.” This year’s focus for Rare Disease Day was on health inequity (see MOM-NOS’ post today to get collectively pissed off about this topic for our children with disabilities). 50% of rare diseases touch children. 8 days before Rare Disease Day, Sylvie hit her 5038 seizure mark (July 14, 2008-February 20, 2011).
5038. That is approximately how many seizures my daughter Sylvie has had since we started counting in 2008. 5038 seizures in 922 days. That’s about 5 ½ seizures a day over the last 2 ½ years. Some of them are small seizures. Some of them are large. Some of them are howlers, and some leave her dazed. 5038 seizures in her tiny little body—we keep tabs by writing them down on a piece a paper on the side of the refrigerator. Her twin sister yells to me if she notices Sylvie seizing when I am out of the room. Her personal care assistants count them. Her aunties and grandparents and neighbors and friends count them. It’s a cooperative effort to estimate her seizure activity every day. We count seizures and Sylvie’s number-loving papa devotedly enters the data into an excel spread sheet in an attempt to make sense of the craziness that jumps around our daughter’s brain. Sylvie and her sister turned 5 in January; that’s 3 years more of living than most kids experience who have Krabbe disease. While papa continues to count seizures, maybe I need to start counting hugs, kisses, coos and loving—I’m guessing they would far outnumber 5038.
When Kirsten Isgro isn’t counting seizures or having tea parties, she is a professor of Communication Studies at the State University of New York and the mother of 5-year old twin girls.