Passing the Torch

Sickle cell warriors LaKisha Johnson and sons continue Dad's legacy. 

By Dwain Hebda/Photography by Lily Darragh and courtesy of Johnson

sickle cell warriors
 

It’s been said we begin dying the day we are born; that every minute and milestone represents another sheaf of life unmoored and fluttering to the floor. Most of us can’t bear to think in those terms even metaphorically, but for some the spectre of impending mortality only serves as a motivator for which they accelerate their life’s work.

These people, those who have been given more life than time, streak through us like the last of summer’s fireflies, burning even brighter for the knowledge that their season is shorter—over, it seems, before it began.

Germaine Johnson Sr. was one of those people. “He was just my best friend,” said LaKisha Johnson, Germaine’s wife. “You just had to meet him, he was a great person and not just because he was my husband. Just to know him was to love him.”

The two met attending Parkview High School and were close- knit friends for years after graduation. Reunited at the 10-year class reunion after a long absence, they were startled to discover friendship had ripened into deeper feelings and they began “kinda dating-not dating,” as LaKisha put it. Both had a child from a previous relationship when they married in 2001, and they’d have three more together in the years to follow.

“When he came into the room he brought sunshine with him,” LaKisha said. “He just had this bigger-than-life personality. He loved everybody he met, and he found good in everybody he met.”

Fifteen years later, LaKisha still talks of Germaine with something akin to wonder in her voice. It’s a tone you generally hear during giddy infatuation, not from a widow time-wised from watching her husband shrink to nothing under the weight of sickle cell anemia, from watching insatiable medical bills mount, from years pouring equal measures of energy into swaddled babies and a husband gripped in jagged shards of pain.

No, hers is a voice completely and utterly unexpected given the path the Johnsons have walked—the voice of hope.

“Well, first of all, I tell people all the time that this disease is intrusive,” she said. “It doesn’t care. It doesn’t care what your life is like, it doesn’t care that you have five kids, it doesn’t care that you have bills to pay. It just doesn’t care at all. 

“So the disease, whether you want it to or not, is very present in your life. What I learned, and what I know my sons have learned through [Germaine], is no matter how present this disease is, either you let it get you or you decide ‘No, I’m gonna fight against it.’”

sickle cell warriors

Sickle cell disease (SCD) affects roughly 100,000 Americans. A disproportionate number of cases—1 out of 365 according to the Centers for Disease Control and Prevention—affect African Americans. By contrast, the rate of occurrence among Hispanics, the second most- affected group, is 1 out of every 16,300.

The disease gets its name from the way it distorts red blood cells from plump and round to crescent-shaped and hard. Such cells clog up blood vessels, which can lead to stroke, and die off early creating a chronic lack of red blood cells to deliver oxygen throughout the body. Crippling episodes of debilitating pain become a way of life.

“Sickle cell disease is very prominent in Arkansas,” said Dr. Suzanne Saccente, medical director of the Sickle Cell Clinic at Arkansas Children’s Hospital in Little Rock. “Every child born in Arkansas is screened for sickle cell disease; currently at Children’s Hospital we have about 450 patients between 0 and 21 years of age.”

For the vast majority of patients, there is no practical cure, meaning once a child is diagnosed, the name of the game is treatment to manage symptoms and stave off more serious outcomes. Such regimens are highly individualized, as no two patients’ conditions are exactly the same. Even the impact of race has been blurred, by the continued growth in the number of interracial children.

“Just because you have a gene for something, other genes also modify how much of it is expressed in that individual person,” Saccente said. “From a hematologic standpoint, we see the signs and symptoms in patients as soon as fetal or baby hemoglobin goes away. That’s when the manifestations of sickle become evident, and some people are more affected than others because they have other genes that make them more or less anemic or give them other features.”

In the 20 years Saccente has been working in the field, she’s seen a lot that’s encouraging, such as new medicines and technologies that help identify issues and provide a means of control. Among these improvements have been the creation of the Sickle Cell Clinic at ACH and the Adult Sickle Cell Clinical Program at UAMS, a facility Germaine and LaKisha were instrumental in getting open.

“Having a Sickle Cell Adult Clinic now up and running, with a wonderful staff behind it, is amazing,” said Germaine in a quote displayed on the center’s website. “For the first time ever, it gives more hope, something to look forward to. I can see more lives being changed and saved.”

The same could be said for Sickle Cell Support Services, the organization Germaine and LaKisha founded, and which she now leads as executive director. Through SCSS, the Johnsons gave other families an understanding ear, funds for medicine, a summer camp for affected children and anything else Germaine saw that he thought they could improve for others.

The couple landed grant money and established support programs through SCSS. In legislative chambers and on the steps of the statehouse, Germaine sounded the call for awareness and research funding, a tireless voice towing an oxygen tank.

sickle cell warriors

“When he formed the support group, it was good that they were getting together, but then he started noticing all the other facets individuals living with the disease were struggling with,” LaKisha said. “We had some major financial struggles of our own, but he was like, ‘If we’re going through this, then I know somebody else is going through this and we need to give more. We need to figure out how to do more for them.’”

Even as Germaine grew weaker, the urge to help grew stronger and it swept the family along in its wake. By virtue of having a parent with the disease, four of the five Johnson sons—Javan, 23; Germaine Jr., 21; Jaleel, 19; Josiah “JoJo,” 11; and Judah, 6—are trait carriers, but that’s hardly the most significant thing they inherited from their father. Each has his determination and draws from the same well of faith. “Dad would have been proud of you,” is the family’s highest compliment to one another.

Helping to care for Germaine the last six months of his life was intense, but gave the boys the gift of compassion and let them see courage up close. Though their father was physically deteriorated, his message and example were powerful enough to lead them through their grief, which each has navigated differently through music, sports, humor or prayer. JoJo even told his mother he will take over SCSS one day.

“They are definitely stronger. The one thing they will tell you is, ‘Dad wasn’t a quitter and we will not quit,’” LaKisha said. “I’ve seen them surpass many hurdles holding onto Germaine’s ability to push past hurdles, and follow his passion and mission in life.”

sickle cell warriors

True to its word, the disease didn’t care when Germaine’s earthly self finally fell silent; it didn’t care much when LaKisha struck back the only way she knew how, either.

“Germaine left me June 11, 2014; that week we kicked off our golf tournament,” she said. “I had a golf tournament to put on and that Monday we kicked off camp and I never stopped. Somebody asked me the other day how did you carry on, or why did you continue, and I told them ‘No matter how bad this hurts, we were never created for ourselves.’

“Matter of fact, it just makes me want to do more because I know how much he sacrificed and how much he suffered. I’ve seen firsthand what it’s like to live with this disease. For me, it’s now time to pick up that cross and carry it the next mile of the way.”