Posted on June 16, 2020
On April 20th, in the midst of the pandemic, my cousin Benjamin Miller quietly passed away. He was only 44 years old but lived 43 years longer than anyone thought he would.
Ben was born with Zellweger spectrum disorder. As an infant, children with this condition develop life-threatening problems in their organs and tissues, such as the liver, heart, and kidneys. Typically they do not survive beyond the first year of life.
Ben was a one-of-a-kind in many ways, including holding the distinction of being the oldest surviving person in the world with this rare disease.
He had a sturdy build and was very expressive, if not terribly verbal. It was hard for him to speak, see and hear. But his spirit never diminished and he loved to sing.
Ben’s parents, my incredible Uncle Jerry and Aunt Sharon Miller, were as special as their youngest son. They also had a daughter Kristina and twin boys, Lewis and Robert.
Their son Robert, too, lived with Zellweger’s and died in 2005 at the age of 34.
They were given so many challenges for one family. But my Aunt and Uncle, both accomplished professionals in their own right, did everything in their power to support Robert and Ben. I would refer to their devotion as “walking the walk,” but the greatest gift they gave to all of their children was the encouragement to live life to the fullest.
To this day, their strong faith informs everything they do, including their ability and capacity to love and to understand the uniqueness of people with disabilities.
When I think about the heroes in my life, I think of Ben in particular and his parents. I have vivid memories of visiting them in Michigan starting when I was a teenager, and I was always struck by how full of life Ben was. He seemed to have a light shining through him in spite of his challenging circumstances.
And looking back, I believe that Ben was instrumental in helping me eventually figure out what I wanted to do with my own life.
Ben lived in his own home with support and made many special friendships along the way. He was one of those people who changed the world for people who got to know him. He had the ability to melt your heart with his authentic smile and was quick to add the names of his friends and family to the lyrics of the song called, “I Am Special.” His signature song, however, was “You Are My Sunshine,” with “Hail to the Redskins” a distant second, no doubt with a heavy influence from my Uncle.
For the last nine years of his life Ben was in the capable, loving hands of an amazing DSP, Annie Williams, who devoted herself to Ben and was considered part of the Miller family. She loved him as if he was in her family, and like his own parents, the three of them were the embodiment of unconditional love.
Ben may not have had the health and opportunities so many of us have, but he possessed something in his heart and spirit that was limitless, something that couldn’t be dominated by his disease.
My Aunt and Uncle channeled their sorrow and energies by founding a camp in Texas for adults with disabilities, first in the name of their son Robert and later in memory of Ben as well.
When they retired and moved to Southwest Florida, they started again from scratch, making connections, gathering supporters and eventually finding an existing camp location. Known as Trailways Camps, The Robert V. and Benjamin G. Miller Fund was established to develop and provide camping experiences for adults with special needs and respite for their caregivers.
I can assure you that my life and the life of our family have been changed immeasurably by our relationship with Ben and his parents. They had the knack for bringing out the best in all of us.
Ben’s purity of spirit enabled him to value every person he met. His precious gift from God was that his heart was open to all. This is a natural gift we are all given but unfortunately, it can be hardened and closed by all the clutter of life experiences.
That element of simplicity in Ben allowed him to be in touch with the presence of God who protected him from so many of the challenges we have to deal with every day, especially now.
Ben’s life continually reminds me that we all need to find the light within and purity of heart that makes all things possible.
When we do, our world will surely be a better place.