Jenna's Story

Jenna was born in 2007, and from day one, she was a quick learner. She started to crawl and eventually walk very early on in her young life. But from the start of her walking, her parents could see that she struggled much more than other kids her age. Jenna walked with a gait in her step and would often times fall down at a slight bump from other toddlers.

Her family decided to seek medical help, and ultimately after months of appointments and testing, she was diagnosed with Spinal Muscular Atrophy Type III at just under two years old. SMA is a genetic disease affecting the part of the nervous system that controls voluntary muscle movement and is caused by a mutation in the survival motor neuron gene 1 (SMN1). In a healthy person, this gene produces a protein that is critical to the function of the nerves that control our muscles. Without it, those nerve cells cannot properly function and eventually die, leading to debilitating muscle weakness.

From the minute Jenna was diagnosed with SMA, her family’s support system began to form—family members, friends, local doctors and the physical therapist who had worked with Jenna since she was young were all there to guide and support them. They quickly learned that another key resource for their family was the Muscular Dystrophy Association.

Jenna began regular clinic visits at MDA with what they’ve now come to know and refer to as her “team of experts.” Some kids her age don’t like doctor visits but that’s not the case at all with Jenna. She looks forward to seeing her friends in the Omaha clinic a few times a year and always makes sure to “do her stretches” so that the team there will be pleased.  

As Jenna’s ability to walk long distances has become more difficult, her family recently worked with a PT and the team from the MDA to get Jenna into an electric wheel chair. Jenna was thrilled at the thought of having the freedom to move around on her own on the playground, chase the boys and not have to rely on someone else for her mobility.

In 2014, Jenna decided that at six years old, she was plenty old enough to leave home for a week and attend the MDA Summer camp. While she was nervous to leave her mom, dad and brother, on the drive home she couldn’t stop talking about all of the fun she had doing all kinds of crafts, getting to go to the dance with all the older kids, riding a horse, and riding in the sidecar of a motorcycle. Her parents saw it as a chance for Jenna to actively participate in everything without having to be the one on the sideline that struggled to keep up with the other kids.

In addition to the summer camp, Jenna’s family has been active in the MDA community for several years, attending the MDA Gala and supporting the little captain of “Team Jenna” at the MDA Muscle Walk.  

Jenna has always been described as seven going on 17. She’s a typical little girl in so many ways, but she also has the spunk of a teenage girl even though she’s much younger. She loves all things pink, watching princess movies and playing with Barbies.

Jenna’s family has a quote that reads, “You never know how strong you are, until being strong is the only choice you have.” While the strength in Jenna’s muscles might not measure up to other kids her age, they would argue that she’s the strongest little girl they’ve ever met.  

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