In January 2003, we joyfully welcomed the arrival of fraternal twin boys, Sean and Luke. Having struggled with infertility and several miscarriages, we were thrilled with our new family and felt blessed to have twins. For the first few months everything seemed fine. But at 4 months, we noticed that Sean was developing at a slower rate than his brother. While Luke was active, Sean was floppy and couldn’t lift his head.

Sean underwent several doctors’ visits, blood tests and an MRI which led us to July 3, the fateful day when we learned Sean had Spinal Muscular Atrophy Type I and wouldn’t live past two years old at most. As parents, we were blindsided by discovering that both of us carried a hidden gene for SMA that had been on both sides of our families for generations. Thankfully, Sean’s brother Luke was healthy and “SMA-free”. From that day forward our lives had changed; the innocence and joy of caring for newborn twins and imagining their future lives together had been stolen from us.

Devastated by the diagnosis, we made a conscious effort to smother Sean in happiness rather than mourn him while he was alive. Wanting Sean to experience all he could in his short life, we set out to fill his days with fun, not just doctors’ appointments and medical care. We played all kinds of music, discovering his favorites, Lyle Lovett and Louis Armstrong. He and his brother Luke would giggle and smile whenever mom and dad would dance for them. We took trips to the beach where Sean could hear the ocean’s rhythm, and walked daily under the canopy of trees that he watched in delight.

Sean shared his heart with everyone who was in his life. It’s as if he knew his bright smiles and joyful presence kept us going. Even medical professionals, from nurse to doctor to physical therapist, responded to Sean’s sparkle by giving that little bit extra in their day’s work.

9 months on earth.

Forever in our hearts.

By autumn Sean was weakening. He had undergone surgery for a g-tube that was placed in his stomach to help him eat because he had lost his ability to swallow well. He received suctioning throughout the day and became more reliant on oxygen because his breathing was so shallow. His life became housebound. We were nervous and apprehensive as we found ourselves doing things we never imagined we’d do as  parents of a newborn: using a suctioning machine and inserting a narrow tube into our 11 pound baby’s nose and the back of his throat; feeding him through drip bags that passed through a feeding tube into his stomach; watching the oxygen monitor for saturation levels to determine when he needed more oxygen.  Sadly, we became experts at this routine medical care, even using CPR one day to bring him back when he had stopped breathing. His fragile life was truly in our hands.

It was hard to watch as Sean, who had never been able to lift his head or crawl, lost the little movement he had. He could no longer move his arms or shift his head. He had lost his laugh that we loved so much, but his smile remained and he could still move his hands. We reveled in every faint grasp of his hand on our fingers or on his favorite toy. Every moment was cherished as we held him, felt his soft skin, saw him beam as he watched his brother Luke play. In his last hours, the oxygen monitor began beeping indicating his saturation level was dangerously low, but this time the typical efforts of suctioning and extra oxygen didn’t help. His heart and lungs had weakened too much. Offering one last smile, Sean passed away in his father’s arms on October 20, 2003 at 9 months old.

The love visible in his beautiful turquoise eyes. Waking up next to him in the morning and seeing his happy face watching us. His constant smile. With each passing day, we miss those things more. As Luke grows, we miss the future they should have shared.

Even though Sean’s life was short, he taught us the most important lessons. We’ve learned to treasure every day. We have found enormous reservoirs of patience and love even in tough situations. So we move into the future committed to fighting SMA, and take solace in knowing that Sean felt loved every minute of his life.

Your generous contribution to the help The Sean W. Venezia Foundation raise funds to fight SMA will be greatly appreciated.