Elijah Stacy: 20-Year-Old Author With Fatal Disease Seeks Cure, Sees God’s Purpose in Suffering

By Aliya Kuykendall Published on February 4, 2022

He’s a 20-year-old man with a fatal genetic disease called Duchenne’s, which comes with an average life expectancy of 27. Elijah Stacey started losing muscular strength as a young child and became dependent on a power wheelchair at age 11. In his later teenage years he started losing mobility in his arms. The disease leads to death when it deteriorates the strength of the heart and diaphragm.

Stacey’s two younger brothers were also born with the condition. His youngest brother, Ky, is 14. Max, the brother between them, died at age 14. In addition to having Duchenne’s, Max was blind, unable to speak, cognitively delayed, confined to a bed and needed a feeding tube.

Yet Stacey sees no contradiction between the existence of suffering and a good God.

Suffering is “No Reason” Not to Trust God

“It just makes sense to put our faith in him and to trust in him,” Stacey told Randy Robison on LIFE Today Live. Many people reject God because they can’t see how a good God allows suffering, Robison pointed out. “I have no problem with suffering,” Stacey said.

“We can see that suffering could be for our ultimate good. I know this to be true in my life. That because I’m suffering, it has built my character up. It has made me way more dependent on God. And I don’t think I would be this dependent on God if I was just completely healthy, super rich,” Stacey said. “It’s when you have challenges in life — that’s when you call out to God the most. And I think that suffering is a beautiful thing that God will allow happen to people in order to draw them closer to Him.”

We can see that suffering could be for our ultimate good. I know this to be true in my life.

Stacey said he sees a “powerful message” in the fact that someone like him “with a terrible disease, a fatal disease, in a wheelchair, all these challenges — and yet I still love God.” He added, “I hope people can see that just because you have problems and challenges in your life, it’s no reason not to put your trust in God.”

Ambitious Aspirations

While Stacey sees purpose in God allowing human suffering, he also seeks to minimize it. He started a foundation called Destroy Duchenne at age 15, which seeks to “Complete the Cure” for the disease by funding research in CRISPR gene editing therapy.

Stacey is a powerhouse of hope and optimism. “I believe with enough time and enough effort, we can basically do anything, God willing.” His goals for the future include curing Duchenne’s, advancing science, and advancing the kingdom of God. He’s interested in Christian ministry and running for public office. “I want to make things better.”

He also desires marriage and a family, calling marriage and its ability to reflect God “one of the most beautiful things.” He spoke about the tragedy of the divorce rate and his desire to be a model of healthy marriage. (An Instagram video clip from his speech at Max’s funeral highlights what quality parents Stacey has through the way they loved Max. Perhaps the goodness Stacey desires in marriage has something to do with their love.)

“There’s a lot of things I want to do and accomplish, because I feel like I’m just getting started,” Stacey told Robison.

A Small If

Stacey’s ambitious spirit is highlighted in the title of his book, A Small If: The Inspiring Story of a 17-Year-Old with a Fatal Disease — and a Mission to Cure It. When he was 16, his doctor told him he had a curved spine and would need surgery to insert a metal rod in his back to correct it. Stacey didn’t accept it. “I do not want a metal rod inserted into my back.”

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His mom was crying. The doctor handed her a tissue. His dad had his head down. “I am sitting there smiling because I am not accepting this news. I am not gonna have the surgery. I will not.” His doctor was adamant despite Stacey’s objections. He kept planning out details and naming the doctors who would perform the surgery.

“Well, let’s just say — just say — if I was somehow able to reverse the current state of my spine, could I avoid having to have the surgery then?” Stacey asked. The doctor told him, “It’s basically medically impossible. I’ve never seen anybody do it. I don’t want to give you any false hope, and as your doctor I gotta put my foot down and advocate for you to have the surgery. But because I know you, I will give you a small if.'”

All He Needed to Hear

 “A small if” was all Stacey needed to hear. He put a picture of his curved spine on the wall so every day when he woke up he’d remember what he needed to focus on. He changed his diet to lose weight, consumed no sweets, taught himself how to cook and meal plan, worked out every day and endured painful stretches in physical therapy.

“Sometimes it hurt so bad that I’d bite down on my shirt,” Stacey said. “I wanted to correct my spine. I wanted to do the so-called impossible or the improbable more than I cared about the pain, right. So I wanted it bad.” Three months later, when he went to the doctor for a new x-ray, he was “fired up.”

The doctor compared the two x-rays. “Your spine is definitely straighter. You did it.”

Stacey told Robison he had visualized that moment and how good it would feel to motivate himself to reach his goal. “Just like I visualized from three months ago to the final day: it happened.”

“That’s some kind of attitude,” Robison said.

 

Aliya Kuykendall is a staff writer and proofreader for The Stream. You can follow Aliya on Twitter @AliyaKuykendall and follow The Stream @Streamdotorg.

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