Introducing Kevin

It is hard to imagine that a young boy who was unable to move his body (from birth) could live a full and productive life. However, because I had the opportunity to be one of Kevin's nurses (for 15 years), I can clearly share that Kevin had a magical and wonderful existence, rich with friends, extreme joy, and contentment. Some of the things that we strive a lifetime to obtain and hold on to, Kevin possessed at a very young age. 

Kevin at Age 3

Kevin was fully alive (and vibrant) even though his body could not move. Kevin was not trapped in a body--he was living in a body. Perhaps this is why Kevin so enjoyed when others would pick up his hands or feet to bring movement and motion to his body; movement which gave expression to his ongoing--ever present--inner joy. When you assisted Kevin, you became swept up (added into) the overwhelming joy he had for living.

What made his perspective and attitude toward life so unique was that he wasn’t bitter for being born severely disabled and totally dependent upon others. Even though Kevin was on a ventilator 24 hours a day, he was thankful and grateful for the life that he had. And when you were around him, his joy and appreciation had a tendency to rub off on you. In his own way, he was very contagious. I always wanted what he had—a joy for life and living.

I was Kevin's nurse for 15 years (prior to becoming a Special Education teacher); I became a Special Educator in 2002 for Stockton Unified.

It is my hope that you will find joy and comfort in the moments of Kevin's life captured here; his journey was challenging, but joyful. Kevin never took a single day for granted. May you find glimpses of his gratitude hidden in these small snapshots of  a beautiful and endearing life. --Allen Lujan

Kevin ready to meet the day.

Kevin's Diagnosis: Spinal Muscular Atrophy (SMA):

Spinal muscular atrophy is a genetic disorder characterized by weakness and wasting (atrophy) in muscles used for movement (skeletal muscles). It is caused by a loss of specialized nerve cells, called motor neurons that control muscle movement. The weakness tends to be more severe in the muscles that are close to the center of the body (proximal) compared to muscles away from the body's center (distal). The muscle weakness usually worsens with age. There are many types of spinal muscular atrophy that are caused by changes in the same genes. The types differ in age of onset and severity of muscle weakness. https://medlineplus.gov/genetics/condition/spinal-muscular-atrophy/