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