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Pay It Forward

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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.”

SMA is one of the muscle diseases that MDA, Egg Harbor Café’s current Pay It Forward campaign, serves through state-of-the-art treatment and research. Scarlett, who lives in Barrington, receives extraordinary care from her medical team at the MDA Clinic in Madison, Wisconsin. Next summer Scarlett will be old enough to attend one of the MDA Summer Camps that Pay It Forward is helping to support. According to MDA, “Summer Camp offers a fun and safe outdoor experience, along with opportunities to engage in a variety of activities. MDA Summer Camp enables campers to stretch their comfort zones and grow in independence as they spend a week away from home. It’s a place where parents know they can send their children for a week of summer fun and, at the same time, be assured that their child’s medical and physical needs will be met by a team of dedicated health professionals and trained camp volunteers.”

On this birthday, Scarlett is happy and healthy, looking forward to hosting her party, learning at school and playing with friends. Please consider a Pay It Forward contribution to MDA when you visit Egg Harbor Café, and help Scarlett and children like her to live the fulfilled life that Rachel describes on the blog, Wishes for Scarlett:

Our wish for Scarlett is that SMA does not define her life. SMA does not get to decide who she will be. We wish for as many birthdays as possible for our little bear. We wish that we are able to provide Scarlett with everything she needs to live her best life. We feel blessed to have so many praying and wishing for our Scarlett. Your wishes will help her to live life to the fullest.