STUDENT SPOTLIGHT:
LUKE KNAPP
By: Laura and Jeremy Knapp
Luke Michael Knapp was born February 21, 2011. We already had a beautiful daughter and were thrilled to have a baby boy. Luke’ s birth and first few months of life were all very normal. But after those first few months, we began to notice how inactive he was compared to other infants his age and that he didn’ t seem very interested in attempting typical infant milestones, like rolling over. We didn’ t think much of it since he seemed so healthy and normal otherwise. But at 6 months,
4 | THE BEACON when he still hadn’ t rolled over and didn’ t seem even close to being able to sit, we started feeling really concerned. We just kind of knew something difficult was ahead.
We saw the neurologist and had some genetic blood tests ran and Luke was diagnosed with Spinal Muscular Atrophy. Spinal Muscular Atrophy, or SMA, is caused by a mutation in the survival motor neuron gene 1( SMN1). In a healthy person, this gene produces a protein— called survival motor neuron protein or SMN 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 and often fatal muscle weakness. SMA has the potential to be passed on to the child when the mother and father are carriers of the SMA gene. Half of children born with SMA pass away before they are 2 years old. We were told to take him home and enjoy our time with him.
It was like we were in a different world all of a sudden. We had never before experienced such a feeling of helplessness. There was no