Stephanie Robinson never expected her husband to die before her.

Born with a hole in her heart 62 years ago, she wasn’t expected to live past age 36 and even today requires an oxygen supplement 24 hours a day to breathe. Her husband, Phillip, was a bodybuilder and plant worker who took yearly physicals and had no history of medical problems.

In a matter of a month in 2012, Phillip Robinson fell ill and died at 59, leaving Stephanie Robinson to rely on her faith in God and a resolve to make people aware of the dreaded disease that took away her husband of 28 years.

“It’s been a faith walk for me,” said Robinson, who has a condition called Eisenmenger syndrome . “I learned that it’s not always the (leaning) tree that falls. I said, ‘Lord, I thought my husband would be here to take care of our kids.’ It wasn’t meant to be. I thought I would be the first to go with my condition.”

Phillip Robinson died on July 5, 2012, of Creutzfeldt-Jakob disease. CJD is a rare, fatal brain disorder, according to the Creutzfeldt-Jakob Disease Foundation. The incidence of CJD cases in the world is one per million, or about 300 new cases each year, the foundation says.

“It just can’t be one in a million because it’s happening more and more,” Robinson said.

She said she has the opportunity to communicate with families dealing with the disease or the loss of a loved one. She finds many are bitter and urges a relationship with God to get through it.

“They forget that God is sovereign. He can do what he wants to, how he wants to and whom he wants to,” said Robinson, a member of Shiloh Baptist Church in Baton Rouge. “God picks the roses, too. Those people are without Christ. I have learned that my arms are too short to box with God, and I know that God is in everything. And even before Satan could take him, he has to check with the Lord. I know all is well.”

Robinson said there were signs that her normally vibrant husband — whom she called a “prayer warrior” — wasn’t well.

There were three trips to the emergency room that yielded no answers. There was the time he didn’t have the strength to change a flat tire. And then there was the time the 220-pounder was too weak to get out of the bathtub and his thin wife called on divine strength for help.

“I stood in that water and I put my arms under him until God and the Holy Spirit did it,” she said.

It’s that same kind of strength Robinson summoned in the weeks after the formal diagnosis of CJD.

“I know it’s God. Going through it, I did what I had to do for my husband, and I asked God to give me strength and the stamina to do what I had to do,” she said.

Another decision she had to make was cremating her husband. And she plans to have her body cremated.

A Germany company offered to do a biopsy on Phillip Robinson’s brain, but his wife declined.

“That was one of my regrets that I didn’t let them have his brain for the study of the prevention of (CJD),” she said.

In addition to her work with CJD, Robinson also has donated money toward prevention efforts.

“I’ve been making people aware that it’s real,” she said.

Robinson, who retired because of her disability after 23 years at Southern University’s building department, plans to continue her efforts.

Perseverance isn’t foreign to Robinson.

A few years back, her cardiologist brought up the idea of a heart transplant. She would have no part of it.

“I told him God gave me this heart and he knows all about it and I’m still living, so when he calls me home, it’s time for me to go,” she said.

Swinging doors

But Noah …

But Daniel …

But Joshua …

Major decisions, significant events and the course of the lives of many of the most well-known characters in the Bible hinged on that one simple word: but. So says author Roger Mardis in his book “Big Doors Swing on Small Hinges: A Little Word Can Make a Big Difference” (Westbow Press).

“This little word is often the hinge on which a story often turns. Sometimes the story changes for the better, but sometimes it changes for the worse. Whether the change is beneficial or detrimental, it all starts with but,” he writes.

Mardis leads readers through a 31-part journey of several Old and New Testament characters and their stories, which hinged on but.

One of the 161-page book’s subjects was the prophet Daniel. Mardis points out that Daniel was a fine “mortal man” who made wise decisions, and God honored Daniel and his decisions.

“The good news is that just as God honored Daniel’s life, He will honor ours,” Mardis writes. “God blessed his decisions, and He will bless ours. It doesn’t take backbone to go with the flow and be part of the crowd, but it takes guts to say no and be different. We should challenge our young people to dare to be different, to dare to be Daniels. … If Daniel had done what Ashphenaz told him to do, he would not be in the Hall of Faith, but in the Room of Failure. Everything hinges on that small word but.

“But Daniel purposed in his heart.”

Faith Matters runs every other Saturday in The Advocate. Terry Robinson can be reached at (225) 388-0238 or by email to trobinson@