Spinal Muscular Atrophy

By: Teneka Huffman

Everyone remembers their first: their first job, their first heartache, the first time they realized what they were put on this earth to do. Meeting Logan Ruth encompassed all those firsts for On Angels’ Wings.

Logan was the child that made such and impact on our Founder, Michelle L. Cramer, that she immediately started OAW. Meeting the Ruth family and seeing Logan’s incredible smile showed us that making positive memories with our local families is what On Angels’ Wings was created to do.

Logan was diagnosed with Spinal Muscular Atrophy (SMA) and battled for 10 months. SMA is caused from a defective gene that encodes the SMN protein. This protein is crucial for the survival of the cells in the spinal cord that are responsible for muscle contractions. When there is not enough SMN protein produced, muscles become weaker and atrophied. Muscles closer to the center of the body are typically the first affected, so those born with SMA either do not have the ability to walk, sit, or stand, or they lose that ability over time. There is also a strong possibility they will develop respiratory issues.

SMA is very similar to ALS/Lou Gherig’s disease in the fact that both are motor neuron diseases. ALS progresses more as the patient ages, but the earlier the onset of SMA, the greater the impact on motor function. ALS is more widely known, however, ALS affects one in every 500,000 adults, while SMA affects one in every six to ten thousand infants. SMA is the number one genetic killer of children under the age of two, yet is still considered to be a rare disease. One in every 40 people is a carrier, and a simple DNA test is all that’s required to determine if you carry the gene.

Logan’s legacy lives on, not only through his contribution to the development of On Angels’ Wings, but through the organization his family started too. The Logan Ruth SMA Foundation was established to raise awareness for SMA, support newly diagnosed families, and help the search for a cure. Check out the Logan Ruth SMA Foundation on Facebook—there are lots of ways to donate, participate, and get involved.

One beautiful thing with SMA is that cognitive function is not lost. Children with SMA typically have traditional brain development. One can only hope that along with cognitive development comes emotional development as well. SMA may steal a child’s ability to stand, but it cannot steal the ability to love and BE loved.

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