In the weeks prior to this past Christmas, a fourth grade teacher at Hough Street Elementary School and a friend of mine here in Barrington, Rachel Sepe, sent an email requesting prayers for her eight-month-old daughter, Scarlett. The severity of Rachel’s email was startling. Because of a hand tremor present at birth and difficulties rolling and bearing weight on her feet, Scarlett’s doctors had ordered tests for a genetic disorder called Spinal Muscular Atrophy. In that late November email, Rachel wrote,
“SMA is a terminal disease that causes muscles to deteriorate which eventually leads to respiratory failure. The life expectancy varies, but for a child Scarlett’s age who is already showing symptoms, it isn’t very long. As you can imagine, Mike and I are filled with fear and grief over the magnitude of what may lie ahead. We are asking everyone to please pray specifically that this test comes back negative.”
The waiting period for those test results was an excruciating two weeks. As we all hung ornaments and prepared for Santa’s arrival, the Sepe family mailed their annual holiday card and prayed for a miracle.
But on December 14, Rachel and Mike Sepe received the news they most feared. Scarlett has SMA, a disease for which there is no treatment or cure. Their smiley, bright eyed and perfectly beautiful baby girl faces a lifetime of physical challenges as the disease weakens the muscles she needs to crawl, walk, eat, swallow and breathe. I recently sat with Rachel on her family room couch and asked how she was doing. There was a long, silent pause before she wiped away tears and whispered, “There are no words.”
Since the diagnosis, Rachel and Mike have spent hours with Scarlett and specialists at Children’s Memorial Hospital in Chicago. They’re still adjusting to a new world of unknowns which includes medical tests, sleep studies and questions that can’t be answered. When will Scarlett’s more serious symptoms appear? Will they be able to protect her from common colds that could threaten her life? Will she have trouble breathing in the middle of the night?
And as the reality of Scarlett’s condition sinks in, there’s no quieting financial concerns about how they’ll afford all the needs that medical insurance may not cover. A child’s wheelchair alone can cost up to $40,000 and their car and home both need to be made accessible. It’s uncharted territory for any mom, let alone one who prides herself on being organized, in control and prepared for anything.
Two months after Scarelett’s diagnosis, Rachel has put her thoughts into words and is sharing her story publicly. This week, the Sepe family introduced a website at WishesForScarlett.com. It’s a way for them to explain the disease and let others know what’s happening with updates about Scarlett’s condition and the latest SMA research. I know it wasn’t easy to write, but I want to share a few excerpts here because you can’t help but be moved by the words Rachel shares about the experience and their wishes for Scarlett…