A Day in the Life of Scarlett
It is Scarlett’s fifth birthday and she is enjoying lunch with her mom Rachel Sepe and their friend Amanda Konopka at Egg Harbor Café in Barrington. Wearing a pink paper crown, Scarlett’s eyes sparkle as she opens a gift (a soft toy puppy she promptly names Clarice) and describes the activities for her upcoming birthday party. When a server arrives, Scarlett orders her favorite meal: fruit and Harbor potatoes, with lots of ketchup.
Scarlett’s vegan diet boosts her health. Four years ago, Scarlett was diagnosed with Spinal Muscular Atrophy (SMA), a genetic motor neuron condition that causes muscle weakness in the arms and legs of children.
Sitting next to Scarlett, Rachel grazes on a Door County Chicken Salad and watches her daughter lift potatoes and fruit with light plastic utensils. Rachel is friendly, articulate and open as she describes life with SMA. Patients with SMA typically lose muscle function over time, she explains. Although Scarlett is highly intelligent, her muscles are very weak and she uses a small motorized wheelchair for mobility. Twice-daily respiratory treatments and regular physical and occupational therapies help Scarlett to live a full, active life. Although this regimen is physically demanding, Rachel celebrates Scarlett’s successes, hoping and working for her long-term well-being while acknowledging, “The hardest part of SMA is not knowing.”