These photos were submitted by Sierra Kulas in her submission to DNAsimple's First Rare Disease Art and Awareness Contest. Thank you, Sierra, and congratulations!
For those who are unfamiliar, Spinal Muscular Atrophy (see Wikipedia's page
) is a debilitating neurological genetic disease which affects a protein (called SMN) which is necessary for the survival of motor neurons. This leads to the progressive failure of muscle tissue over time and manifests in numerous painful and severe ways. While there are treatments for symptoms of SMA, there is no cure, and drugs which target SMA specifically have still not been approved by the US FDA.
We hope the photos below will give you a tiny insight into the still-colorful life of one child with this disease.
Congratulations from the DNAsimple team, Sierra!