On a warm, spring day in North Carolina, a little girl with brilliant, sparkling eyes and an infectious smile sits casually on the floor in her home. Her sweet voice can be heard singing songs that other children her age sing, like “I’m a Little Teapot” (To see Emma sing, check out this video!). It’s hard not to smile as you listen to Emma Grace Shifflett, but there is something about this little girl that makes you want to just give her a hug. She certainly has personality, charm and the potential to be a future heartbreaker.

At age 4, Emma is just like any other girl her age. She loves to play with her friends and family, read, be read to and she really enjoys watching cartoons! Other interests for Emma include picking flowers, blowing bubbles and playing with her Polly Pocket toys and fairies. Just looking at Emma and hearing her sing it’s hard to imagine that she has a degenerative muscle disease. Unless you see her out in her wheelchair, which she loves to drive, you might not even realize she is in a wheelchair.

Emma’s parents, Brandy and Darrell, found out that Emma had Spinal Muscular Atrophy Type II when she was 16 months old. Emma’s disability was diagnosed through DNA testing. Spinal Muscular Atrophy Type II is sometimes called Intermediate SMA. Diagnosis for SMA Type II is generally achieved between the ages of 6 and 18 months. For Emma, this means that while she can sit unsupported, she can no longer crawl and has never been able to stand or walk unassisted. Still, that hardly keeps Emma from doing the things she likes to do.

According to her mother, Brandy, Emma is a very loving and caring person. She loves to go to school and play with the other kids. Just because she might not be able to walk doesn’t mean she won’t try new things or find a way to do things that others might think Emma is incapable of doing. Like most children with SMA, Emma is incredibly intelligent. Any weaknesses she might have physically have no affect on her ability to learn or grow as a person.

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For Judy Helsel, her days are long, she works from morning until she goes to bed, and the work she does is grueling. However, everything she does is worth it because she spends her days taking care of her son, Brian. Brian is a 25 year old with Duchenne Muscular Dystrophy. However, Brian has an incredibly busy life. His disability does not stop him from enjoying racing (NASCAR and his dad’s racer), attending special events for his local MDA, watching the Toledo Mud Hens play, and fixing computers.

The challenges that Judy does face stem not from how Brian lives his life, but from the caregiving she must offer him nearly 24/7. Caregivers across the United States are facing the same challenges as they have little assistance, no time for themselves, and make meager wages for the intense work they do. In truth, many of these women (yes the vast majority of caregivers are women) are unable to get other jobs outside the home due to the schedules they must work. This means they depend on the minor ducats the government dishes out to them once a month.

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