It’s been thirty years since my baby brother Scott died. It does not seem possible. Today he would have turned 56.
Born with a rare genetic disease called Tuberous Sclerosis, it is characterized by benign tumors that effect multiple organs. His tumors caused seizures, developmental delay, intellectual impairment and autism. The severity of Scott’s diagnosis included kidney angiomyolipoma and heart rhabdomyomas which ultimately took his life at just 26 years old.
Born the 4th, and last child, the dynamics in our family changed immediately. I was 14, the eldest, with two other brothers who were just 12 and 9 when surprise baby Scott arrived. My parents were devastated with initial Scott’s diagnosis, yet true to their character they were remarkably open, honest, loving and committed to his wellbeing. We all jumped into the roles of protectors, teachers, champions, babysitters, and that beautiful baby thrived.
We were told he would never walk. As a family we worked tirelessly, and on his 3rd birthday he was toddling. Told he’d never have much coordination, we spent hours teaching him to ride a bike, swim, dribble a basketball, climb a jungle gym. By thirteen he was winning trophies for bowling and swam like a fish.
This was my 18th birthday. He was just 4 and loved to help blow out my candles.
He was a happy, joyous boy. As he grew his athletic ability flourished, and he collected Special Olympic medals in a variety of sports. Yet his learning capacity remained about a 50 IQ. He never mastered reading and had only a rudimentarily ability to write a few letters. We felt fortunate that he was happy, active, social, verbal and a lot of fun. My parents were remarkably patient, nurturing and entirely devoted to him.
Sadly, my sisters-in-law never knew Scott. But Doug did, and very well. Scott thought of Doug as another brother, and they were the best of friends. We were grief-stricken at his sudden death, and so it was Doug who stepped up to do his eulogy, brilliantly.
For my brothers and I, our baby brother is a legend. We still tell “Scott” stories. Some very funny, some poignantly sad. With our beloved parents now gone, Scott stories remain as much a part of our childhood as any of our family memories. He enriched our lives immeasurably and strengthened the bond that as siblings we have.
One of the very last photos of Scott, in 1991, with all the men in my life. My other little brothers Chris and Steve, my father, and Doug. This was taken in Steamboat Springs Colorado, a place we all, especially Scott, adored.
Today, thirty years later, there is still no cure for TSC, and powerful research and outreach continues with the TSC Alliance. The challenges of a precise genetic diagnosis of TSC remains undetected by amniocentesis.
I’m not sure if it was just coincidence or divine intervention that today, on his birthday, Doug and I attended a spectacular event hosted by the One Hundred Children’s Foundation here in our community. This organization promotes the health, education & well-being of Savannah children by financially supporting child-focused outreach programs in our area. The lovely evening event raised thousands for their magnificent mission. For me, the evening was a tribute to my brother, and all children who require special care.
I wore a photo of him on my shoulder. Happy birthday my sweet, sweet baby Scott. I will never stop missing you.