By Katie Kerwin McCrimmon and Mario Flores
The paralyzed 19-year-old couldn’t even reach for her phone.
She also couldn’t stand up, go to the bathroom by herself, brush her hair, dress herself or wear the high heels she used to love.
A rare spinal stroke left Marleni Ochoa paralyzed, hospitalized and feeling utterly hopeless.
Doctors warned Marleni, her three sisters and their mother that she might never walk again.
“We crumbled when we heard that,” said Marleni’s mother, Illiana.
But doctors soon discovered that the women in this close-knit family are “firecrackers” and Marleni and her mom dug deep to fight back.
Marleni had to spend nearly a month at UCHealth University of Colorado Hospital, first receiving care from ER doctors, then neurologists, then from a team of rehabilitation experts.
By the time Marleni could go home, she still needed an automated wheelchair and a hospital bed. But within weeks, defying all expectations, Marleni stood up and started walking again.
“I’m astonished,” said Dr. William Niehaus, a physical medicine and rehabilitation specialist who cared for Marleni. “I’ve had several other patients with similar posterior spinal cord injuries. Several still are in wheelchairs. Marleni’s recovery is not unheard of, but it’s unusual. I’m incredibly thankful and astonished that her sensation and strength came back.”
After rare spinal stroke: ‘We all prayed. I asked God to heal her’
Back in August of 2018, Marleni woke early one morning and called her mom. Her back was sore. The women wondered at first if Marleni had slept funny and had a crick in her neck. But, before long, she was feeling terrible, couldn’t walk and had to go to the hospital.
The symptoms kept getting stranger.
“She couldn’t feel her arms or legs,” Illiana said.
Marleni also was having spasms. Her stomach felt funny. She was sure she had to use the bathroom, but nothing would come out. After that, she couldn’t remember anything else.
“I blacked out,” Marleni said.
At first, the ER doctors didn’t know what to make of her symptoms. Since Marleni was only 19 at the time, the team initially did not suspect any kind of a stroke, much less a very rare spinal stroke. But once neurologists examined Marleni, they found that blood had stopped flowing to part of her spinal column, causing Marleni’s paralysis.
Most people think about strokes taking place in the brain. But Marleni’s stroke occurred high in her spinal column, close to the base of her neck.
While doctors will never know for sure, Niehaus suspects that Marleni was born with what’s known as an arteriovenous malformation, meaning that some of her blood vessels formed incorrectly and were tangled. In an unlucky turn, she happened to hold her neck in a position that cut off blood to the area with previously damaged blood vessels, said Niehaus, who is also an assistant professor of Physical Medicine and Rehabilitation at the University of Colorado School of Medicine on the Anschutz Medical Campus.
From the moment Marleni went into the hospital, her mom, sisters and their children became her cheering section.
“The whole family was together. It was tough, but family is the most important thing to us. We all prayed. I asked God to heal her,” Illiana said.
Orphaned at 4 in Guatemala, Marleni’s mom honed survival skills as a child
To help her daughter survive the stroke and its aftermath, Illiana relied on survival skills she had learned as a child.
“I knew I had to be strong for her. She didn’t see me cry at the hospital. When I would come home, I’d cry, but I was determined not to have her see any of my tears.”
Born in Guatemala and orphaned when she was only 4, Illiana had to move in with an older sister after her parents died. She sold candy on the streets to help the family survive. Then, when Illiana was only 13, her sister sent her on a difficult and traumatic journey to the U.S. Illiana ended up in a California immigration detention facility for seven months.
She eventually was released and went on to work in the U.S. and have four daughters, including Marleni, who is Illiana’s youngest. The family moved to Denver when Marleni was 2. Marleni’s life was much easier than her mom’s — until she suffered the stroke.
That’s when all the women in this learned that Illiana had passed down the resiliency gene.
Bleak prognosis, but ‘tough go-getter’ beats the odds
Doctors had to paint a realistic portrait for Marleni and her family.
“My role is to plan for the worst and hope for the best,” Niehaus said.
It was quite possible that Marleni never would walk again.
But, Niehuas was stunned to see how Marleni kept shattering expectations.
“She made huge, huge progress. She’s a tough go-getter, and her family is amazing,” Niehaus said.
The reason that the stroke was so devastating is that it struck the part of Marleni’s spinal column that relays information from the body to the brain about where limbs are in space.
In order to move our bodies, our arms and legs must work physically. But there’s more to it. Our brains also must be able to send messages via nerves that travel through the spinal column.
Niehaus gives an example of how this system works. Close your eyes and hold one arm above your head. If your body is functioning properly, even though you can’t see your arm with your eyes closed, you can feel it above your head.
Marleni’s stroke shut down the system that sends the information about where her limbs are located in space. Even if she could lift her arm over her head, she had no way of “feeling” that her arm was above her head since the stroke had damaged nerves that carry those messages to her brain.
“It turns out that knowing where your body is in space is a really big deal,” Niehaus said. “To be able to walk, you don’t just need strength. You also need to be able to change your position in space.
“When Marleni came to the rehabilitation unit, she was weak in both her arms and legs. She was especially weak on the left side,” Niehaus said. “She could barely move and the bigger issue was that she couldn’t plan how to move because she couldn’t tell where her body was in space.”
While the initial prognosis was dire, Marleni and her family refused to accept that paralysis was her new normal.
“She worked her tail off,” Niehaus said. “She’s super dedicated. She loved working with therapists and really took off.”
‘Don’t get too used to that wheelchair’
After weeks of hard work in the hospital, Marleni was able to go home with her mom on September 14, nearly 4 weeks after the stroke. At her mom’s Denver house, Marleni had to get around in a powered wheelchair and had to sleep in a fully motorized hospital bed. When she wanted to see her phone or needed to use the bathroom, she had to ask her mom or sisters for help.
That’s when the toughness really kicked in.
Illiana knew that if Marleni was going to improve, she had to force her daughter to rise up and start taking care of herself.
“I taught her not to depend on me,” Illiana said. “Sometimes I’m a little hard on my girls. I do it for their own good.”
Illiana warned Marleni not “to get too used to the wheelchair.”
The family cooked for Marleni and served her food. At first, they had to insert a catheter for her to go to the bathroom.
But little by little, Marleni started taking on more tasks for herself.
About a week after she got home, she was able to go to the bathroom for the first time without help. Then Marleni started using a walker and began shuffling around the apartment instead of relying solely on the wheelchair. Little by little, Marleni began helping with laundry and cooking.
A major turning point came on September 25, Marleni’s 20th birthday.
The family gathered to celebrate at a sister’s house.
Marleni arrived in her wheelchair, but family members soon were encouraging her to try standing up. They held her on her feet, and as festive music played, they also said she should try dancing. Cradled in the arms of loved ones, Marleni moved as best as she could to the music.
“That was a good day,” Marleni said. “I started to see that things could get way better. I felt so happy.”
Inspired by her mom, Marleni found new motivation.
“My mom is a strong woman. She overcame a lot of obstacles. I wanted to get up and be strong for her and for everybody. I told them, ‘I am going to walk again. I am going to be who I was.’”
Two days after her birthday party, Marleni started walking on her own.
“I can’t stop,” she told herself. “I need to try harder.”
And so, she did.
On top of working relentlessly at home, Marleni also met frequently with outpatient physical and occupational therapists and did follow-up appointments with Niehaus, whom she calls one of her “angels.”
She got better so quickly that soon, she was able to give her hospital bed away.
“I was moving on my own. I could get up a little and sit down.”
Putting spinal stroke behind her: ‘I really wanted to be independent’
As Marleni’s ability to walk improved, she started tracking her steps.
Once told she’d be lucky to walk just 80 steps on her own, Marleni smashed that barrier.
Sometimes she reached 10,000 steps in a single day, a great accomplishment for anyone, much less a young person who had recently suffered a stroke.
She found great satisfaction in achieving each new goal.
“It’s the little things that we take for granted. I just really wanted to be independent. I wanted to be able to get around and do my own thing,” she said.
“I feel proud and I’m so happy about everything I’ve done. I’ve come a long way. I’m pretty sure that if a random person saw me, they wouldn’t have any idea about all the struggles I’ve endured,” Marleni said.
She has not yet started driving again. Until recently, she couldn’t feel her foot on the gas pedal or the brake. She does now, so there’s hope she’ll be behind the wheel again soon. Sometimes her hands and feet still tingle. She hasn’t been able to wear the high heels she used to love. And so far, she hasn’t been able to work.
Sometimes she gets down and asks, “Why me?”
“I wouldn’t wish this on anyone. But I’m a really strong person and I have to think that this is God’s plan.”
Illiana reinforces the idea that faith will guide them.
“We made it. The love and support of family has helped us,” Illiana says. “With God, all things are possible. He’s always watching over us.”
Niehaus will be watching over the family too. And, he’s pretty sure these powerful women can take credit for Marleni’s stunning success.
“It’s baked in. They are wonderful, amazing people. They are all firecrackers,” he said.
He expects great things from Marleni in the future.
“She’s accomplishing all of her goals. She’s off to the races.”
Editor’s note: Mario Flores is a Spanish medical interpreter. He assisted with interviews in Spanish.