Grandma Raises Spinal Muscular Atrophy Awareness After Grandson’s Death

When Rhonda Stevey met her grandson, Koehyn, she was immediately smitten. The grandmother, who lives in Ohio, felt like her grandson was the happiest infant she had ever met. Unfortunately, in September 2021, Koehyn passed away at 18 months old due to complications related to his spinal muscular atrophy (SMA) diagnosis. According to WTFR, Rhonda is now more committed than ever to raising awareness around SMA. 

On October 16, 2021, Rhonda is participating in the Koehyn’s Memorial 5k. The 5K begins at 10am at Bellaire Football Stadium. She hopes to collect donations to support SMA research and to help raise awareness to the greater community. At Koehyn’s funeral, she made a promise that she would not only show people how much she loved him, but that she would ensure that more people were educated about SMA. If she can provide assistance or comfort to even one other family, she says, that is enough. 

Interested in supporting Rhonda and her mission? If so, feel free to call 740-298-0792 to learn more. 

Spinal Muscular Atrophy (SMA)

Spinal muscular atrophy (SMA) is a rare inherited neuromuscular disorder caused by SMN1 gene mutations. Because SMA is inherited in an autosomal recessive pattern, patients must receive two defective genes to inherit this condition. In patients with spinal muscular atrophy, these gene mutations cause motor neuron loss; these normally help control movement. As a result, patients experience mild to severe muscle weakness and wasting. 

There are more than one form of spinal muscular atrophy. For example, Type I is also known as Werdnig-Hoffman disease. Within this severe form, which is often diagnosed at or quickly following birth, patients experience:

  • Difficulty swallowing and breathing
  • Inability to sit or support the head independently
  • Developmental delays 
  • Increased risk of collapsed lungs or respiratory infections

Unfortunately, type I SMA is often fatal before age 2. Next, type II spinal muscular atrophy usually develops within 6-12 months following birth. Symptoms of this form include an inability to stand or walk independently. However, patients often live for longer, sometimes into adulthood. Then comes SMA type III, or Kugelberg-Welander syndrome. This form usually manifests in early childhood or adolescence, and does not usually affect life expectancy. Symptoms include:

  • Difficulty walking or climbing stairs
  • Frequent respiratory infections

Finally, type IV, or adult SMA, is rare and occurs after age 30. Symptoms include breathing issues, tremors, twitching, and mild muscle weakness.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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