When the strokes came, they knew something more had to be done.
Tayla Washington’s sister, Aaron, was born with sickle cell disease in 1994 and had been in and out of hospitals and on drawers full of medications her whole life. She’d had respiratory problems since age 5, countless transfusions as a child, and by the time she was 11, three strokes.
They were debilitating, caused brain damage and could even kill her. They had to be stopped.
There was one chance to save her. It came with a price.
In 2006, 16-year-old Tayla, the oldest of Aaron’s three siblings, was identified as a close enough bone marrow match for doctors to try an experimental transplant. It could drive off the sickle cell, an inherited blood disorder found mainly among African-Americans that can lead to an early death.
But the procedure carried risks. It required Tayla to go under anesthesia while doctors stuck needles into her bones and drew out two liters of marrow, which would then be injected into Aaron’s bones. Donors are sometimes tired and experience pain for days after the procedure.
For Aaron, it would mean her body could be healed.
For Tayla, an athletically gifted, but academically struggling, sophomore at Riverwood International Charter High School in Sandy Springs, it could mean a threat to her future. The competitive hurdler was depending on a track scholarship to go to college. Taking time away from school and track to undergo the procedure could threaten her skills as a competitive hurdler and her prospects for a college education.
She didn’t think twice.
“If I can just go through this little pain to heal her so she can live life like a regular 12-year-old,” Tayla said at the time. “Then I’ll do it any day.”
2
Troubled times
When Aaron was born, her family was living a solidly middle-class suburban life complete with private school educations for her three older siblings, sisters Maya and Tayla and brother Jeremiah.
But the marriage between their parents, high school sweethearts Joyce and Vincent Washington, foundered and ended in divorce in 2000. Based on their court-ordered custody agreement, the children were to live six months at a time with each parent in their separate homes.
Joyce, a homemaker during her marriage, struggled financially after the breakup, finding it hard to land a full-time job, or keep one.
She went to court hoping to get full primary custody of the children, but a judge decided Vincent’s home was a better environment. He had remarried and was financially stable with a steady job and a home.
But Joyce didn’t agree with the quality of care Aaron was getting at her father’s, so she began a three-year battle to win back custody of the children, which she finally received in 2005.
“I was constantly working, trying to provide (health coverage and monthly child support) for my kids,” said Vincent. “I couldn’t be at the hospital on a daily basis. Joyce and I don’t see eye-to-eye on many things. To avoid any conflicts with Aaron’s care, I had to step back and allow her to be the primary decision maker, trusting the right decisions from Joyce and the medical team would be made.”
Joyce had her children back, but her financial troubles continued. She wasn’t able to hold on to a job because she often needed to take off time from work to be with Aaron, who was in the hospital for days or weeks at a stretch. She worked part time, mostly in hospitality industry jobs, and she also provided wellness coaching and physical training on the side in the hope of someday starting her own business in that field.
Caring for Aaron while trying to support her kids weighed on her, but she drew strength from her faith and her friends.
A network of supporters helped get them through financially. Neighbors donated food, and volunteers from the Sandy Springs Community Action Center helped fill the gaps. The family received grocery store gift cards and the kids got school supplies. One time, Maya mentioned that she missed having a real tree for Christmas. From then on, they always had one.
Tayla watched all this and wanted to help, too. She couldn’t do much, so she offered to do the one thing she thought would help.
She could drop out of school, she told Joyce. That way she could get a job and earn some money to help her family.
No way, Joyce told her firmly. Do that and there would be no more track competitions, no college and probably no good career options.
3
A sister’s devotion
So Tayla helped the only way she could — she spent time with Aaron, whose frequent hospitalizations and physical limitations had left her isolated and friendless.
Not wanting Aaron to feel left out, Tayla occasionally took her along on social outings with friends. It wasn’t always easy. Aaron tired easily and was sensitive to light.
Mostly they had “sister days” when they did “girly stuff” like painting their nails or going to the mall.
All the while, Tayla was struggling in school, especially in math, but she discovered focus and passion running track.
Tall and graceful, Tayla comes from an athletic family: Her father ran hurdles in high school and played football at Michigan. Her brother Jeremiah played football, too, and demonstrated track skills as well.
She had no experience hurdling but immediately loved it. It was a release for her, a place to block out her worries and fears.
Hurdling taught Tayla something, too.
“You can love things until they cease to be an obstacle,” she said. “Soon, hurdles aren’t an obstacle, and you are flying over them.”
She loved it so much that she rushed back to competition too soon after the bone marrow transplant. Following the surgery, Tayla’s immune system was running on empty. Weak and anemic, she contracted bronchitis and pneumonia, missing days of school. And she suffered with phantom feelings of tenderness in the area where the marrow was harvested, a sensation that would last two years.
Running the 300-meter hurdles in a meet at Westminster School, Tayla was leading the pack when she stumbled and fell. It was the first time she had fallen, and as the runners who had been lagging behind began to pass her, she lay there stunned. To her, it felt like forever that she was down. She might have stayed down — she couldn’t win anyway — but everything inside her told her to get back up and get going. So she did, and she finished third, passing all but two of the girls who had run by her on the ground.
Her dedication paid off. At the state championships her senior year, Tayla ran the
110-meter hurdles and finished third.
A former track coach at Jacksonville State University in eastern Alabama saw her performance and told Tayla a scholarship could be hers if she improved her grades.
She didn’t graduate from high school on time because she lacked enough credits, but she went to summer school, got her credits and got into college.
Her academic struggles didn’t magically fade, though. Things got so bad that Tayla flunked some classes and was placed on academic probation. Everything she had worked for was in doubt. And there were new troubles at home.
4
Without a home
One weekend in February 2010, Tayla came home from college and discovered there was no house to come home to.
The family had been forced out for failure to pay rent. Aaron was in the hospital, but the rest of the family was staying in a shelter.
Again, Tayla felt a desperate need to help her mother.
She told Joyce she wanted to drop out of school, come back home and get a job to provide some financial support.
Again, her mother said no. Tayla had come too far to stop now. She would finish college.
So Tayla went back to school, and the family eventually returned to their rental house.
About that time, Aaron took another turn for the worse.
The bone marrow transplant had cured her of sickle cell disease, but she had suffered irreversible brain damage from the strokes and started having seizures. She was hospitalized at the Aflac Cancer and Blood Disorders Center at Children’s Healthcare of Atlanta and put on a variety of medications to combat them, but still the seizures kept coming. Not only did the drugs not stop the seizures, they changed Aaron’s personality.
Aaron had always been remarkably upbeat, optimistic even, despite a life spent mostly at home and in hospitals, and she was often in pain. But now she started to talk about ending her life. She imagined riding her bike into a car.
Tayla was scared for her little sister. She was alone in her dark thoughts and isolated in the facility, and Tayla couldn’t do anything for her.
It took some doing, but Joyce eventually got Aaron released from the hospital and off the drugs. Still, the seizures had to be stopped. There could be no normal life otherwise, for any of them.
5
Running toward a goal
As the family coped with Aaron’s seizures, Tayla began to make progress in school. After years of struggling academically, she was finally diagnosed with Attention Deficit Disorder and began to get specialized help for it. She was focusing on college and getting through it. Sometimes it took everything she had.
During the winter of her sophomore year, Tayla was set to run at the Ohio Valley Conference championships at Tennessee State University. Right before her meet in the 55-meter hurdles, she got word that a cousin, with whom she was especially close, had been shot and killed in New York City.
As she bent into the starting blocks, everything that she had been through rushed over her — all the years of Aaron’s suffering, her mom’s struggles to support the family and keep it together, and now the sudden loss of a loved one.
She could pull out of the race, she thought. And who would blame her?
If she ran, though, it might prove something to herself.
She bent into position. The starter’s gun cracked and Tayla sprang forward, legs and arms pumping furiously, running side-by-side, stride-for-stride with girls on both sides of her, all the way to the tape.
When it was over, she slowed and stopped. Off to the side, she heard her teammates cheering, her coach yelling. Tayla didn’t bother to look at her time. It didn’t matter, really. She’d stuck it out. She’d done it.
She wasn’t aware she had taken third, that she had run her personal best time and broken Jacksonville State’s indoor school record in the process.
Thanks to summer school sessions, help for ADD, and a change of majors from physical education to liberal studies, Tayla overcame many of her academic troubles. New confidence on the track helped her hurdling, even though injuries slowed her some.
She was so close to the finish line, now in her senior year, but there was one more medical crisis at home to deal with, and one more test.
6
Facing the future
Last year, doctors at the pediatric epilepsy center at Children’s Healthcare of Atlanta pinpointed the spot in Aaron’s brain where her seizures originated. They determined she was a good candidate for surgery, which could put an end to the seizures.
As Aaron prepared to undergo the procedure in September, Tayla missed important classes to be with her sister. She had to. It was the first time she had seen real fear in Aaron, and she had to be there for her.
The surgery was a success, and a year later Aaron is seizure free. But there have been serious complications from the damage to her brain.
Aaron is 20 now, but she acts more like a girl of 12 or 13. She has trouble controlling her emotions, and she sometimes seems detached. Her memory is impaired and she has difficulty learning, among other issues. She needs extensive, specialized and costly therapy in the next few years to have a chance to improve, and Joyce, her family and friends are trying to raise funds to help cover the costs to come. Still, she’ll probably never live an independent life.
Aaron has dreams, though. She would like to work with animals some day, perhaps assist a veterinarian. She has a gentle way about her and animals seem attracted to her.
Tayla likes that idea. That way, she says, Aaron can take care of someone else for a change.
The question remains, though, who will care for Aaron in the future?
Joyce is only 49, but Aaron could outlive her by many years.
Children’s Hospital workers told Joyce she needed to file for guardianship and get a will stating who should take over care for Aaron after Joyce dies.
So Joyce recently sat Aaron’s siblings down and told them straight.
You're growing up. You guys have your lives. You may get married, your spouses might not want this responsibility, Joyce said. This is your choice. You don't have to take this on.
There was a brief pause. Then Tayla spoke up.
Aaron is coming with me, she said definitively.
Maya and Jeremiah, hearing this, jumped in. They all would help care for Aaron.
♦♦♦
On a warm and rainy Friday night last August, Tayla donned a cap and gown and entered a football stadium full of cheering people, including a whooping Aaron. With her bachelor of arts diploma clenched in her fist, she thrust her hands high above her head in triumph, a smile wide across her face.
When she got back to her seat, Tayla hugged her mother, remembering all she had done to help Tayla get into college and stay there.
"You did this," Tayla said.
"No," said Joyce, "You did this."
HOW WE GOT THE STORY
The Atlanta Journal-Constitution first reported on Aaron Washington’s lifelong battle for health and normalcy in 2006 when she was 12 years old and suffering from severe sickle cell disease. Subsequent stories told how a remarkable transplant surgery helped her beat the illness. But the story didn’t end there. Aaron’s medical issues persisted and so did the emotional and financial strain on her family members, including her older sister, Tayla, and their mother, Joyce, who in different ways put their lives on hold to care for Aaron. The Washingtons’ struggle isn’t over — Aaron still suffers myriad problems — and it may never be. But, as their story shows, a family united in support of each other can endure.
David Markiewicz
Staff reporter
About the reporter
David Markiewicz has written Personal Journeys about a local entrepreneur who hoped to get rich selling a better hot dog bun steamer and an Atlanta lawyer who battled mental illness and told the world about it. He's also written about the less personal journeys of athletes, business people and politicians in various other articles for the AJC.
About the photographer
Kent D. Johnson is a veteran journalist with more than 31 years experience. He joined the AJC as sports photo editor in 1998 and has held a number of visual editing and shooting roles at the paper since, including photo assignment editor for nine years. Johnson also worked at papers in Charlotte, N.C., Jackson, Miss., Fort Myers, Fla., and Muskogee, Okla.
About the Author
