Spencer West - Legless Man Summits Kilimanjaro - Spencer West Gets a Bad Diagnosis

Spencer West, as a young child growing-up without full use of his legs, is seen here in his wheel-chair. At this point in his life, he had already undergone one amputation procedure which removed both of his legs at the knee. Image online via Free the Children.


Kenny and Tonette West had an unexpected surprise when their son was born in 1981. Something was very wrong with their baby’s legs:

...while they appeared to have some movement, [they] didn’t have the muscle control that the legs of a healthy baby would have. My legs also hung in such a manner that, as my Dad put it, looked like I had frog’s legs.

Lucky for me, it didn’t matter one bit to my parents or the rest of the family. They accepted me for who I was - their Spencer. (See Standing Tall, by Spencer West, at page 11.)

What was wrong with Spencer? He had a condition known as sacral agenesis , which means his spine developed abnormally. And ... Spencer’s form of the illness was serious, not mild:

I had a serious form of the illness, too. X-rays showed that my entire sacrum - the bones at the bottom of the spine that form a triangle and connect, in layman’s terms, my backbones to my leg bones - was missing. “I don’t think he will ever sit up,” one doctor told my Mom and Dad. (Standing Tall, pages 11-12.)

What was his life expectancy?

Another doctor at the hospital said I would be lucky if I lived until I was a teenager, as children with such severe cases of sacral agenesis rarely do. (Standing Tall, page 12.)

Using a slightly more optimistic tone, yet another doctor thought Spencer’s parents should help him to pursue very sedentary interests. He wrote in the baby’s medical records:

...plan that the child will have to be basically sedentary, so they should help him develop interests in music reading and writing. (Standing Tall, page 12.)

Although this was not the news Kenny and Tonette West wanted to hear, about their newborn son, they quickly realized they had to explore other options. Looking forward to playing baseball with his son, Kenny assessed the unexpected situation using a baseball analogy:

...the pitcher in the game of life had thrown Dad a curve ball. The game he hoped to be playing as a Dad had suddenly changed. Sulking off to the bench was not an option. He would play by the new rules. (Standing Tall, page 12.)

Tonette completely agreed:

She felt connected to me long before the doctor delivered me. She didn’t need to force herself to see beyond my disability. She already did. She saw my potential as a human being from the get-go. And it was this immediate acceptance of me, the way I was, that would influence me the most as a child. (Standing Tall, page 12.)

In the meantime, though, the doctors had to make a plan for Spencer’s legs.

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Author: Carole D. Bos, J.D. 5183stories and lessons created

Original Release: Feb 02, 2016

Updated Last Revision: Jun 16, 2016

To cite this story (For MLA citation guidance see easybib or OWL ):

"Spencer West Gets a Bad Diagnosis" AwesomeStories.com. Feb 02, 2016. Aug 19, 2019.
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