NEED TO KNOW
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Lexi Cook details to PEOPLE how her son was diagnosed with cerebral palsy four months after he was born prematurely
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Initially, Cook was told her son would never see her or learn to walk
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Thanks to a robust team of doctors, her son, Bo, has made significant progress, taking his first steps at 3 years old
Everything seemed to be going well with Lexi Cook’s pregnancy until she returned home from Christmas vacation. When she went to the bathroom, she noticed blood. At 29 weeks pregnant, the Utah native found it a bit strange, so she went to her ultrasound technician to make sure everything was okay. After the doctor checked, Cook, then 23, learned that she was in active labor.
Since it was so early in her pregnancy, Cook, who’s married to her high school sweetheart, was rushed across the street to the hospital, where doctors were able to stop the labor. She was put on bed rest and prescribed medication until she reached 34 weeks, when she finally gave birth to her son, Bo.
Immediately after delivery, doctors took Bo to the neonatal intensive care unit (NICU) to ensure everything was okay, as he had been born prematurely. The following night, however, Bo began having seizures.
“We just kind of watched it,” Cook, who worked as a medical assistant at an OB/GYN office, tells PEOPLE exclusively. “They did CT scans and other tests, and the NICU doctor came in and said he had a brain bleed, which could have been caused by delivery or other factors.”
“After about 12 hours, the seizures finally stopped,” she adds. “We stayed in the NICU for seven days, and by the end of the week, doctors said everything was totally normal, and we were sent home. No one was overly concerned about the brain bleed because they said sometimes pushing during labor can cause brain bleeds in newborns. So, we left thinking everything would be fine.”
But two months later, Cook began to notice something was off. When she tried to talk to Bo, he would just stare at her blankly, without any reaction. As time passed, she observed her sister’s newborn, who seemed much more interactive and developmentally ahead.
By the time Bo was around four months old, Cook took him to the pediatrician. The pediatrician, as Cook recalls, reassured her, saying, “He was early. He’ll get there,” and advised her to come back in a month. However, when Cook returned a month later and explained that Bo still wasn’t responding — despite her waving her hand in front of his face and trying other things — there was nothing. Just a blank, deadpan gaze.
At that point, Cook was determined. She told the pediatrician she wasn’t leaving until someone gave her a different answer. After much back-and-forth, the pediatrician finally agreed to do an MRI. The results showed brain damage in the back of Bo’s brain, near his occipital lobe.
Not long after, Bo was diagnosed with cerebral palsy, a neurological condition that affects movement and muscle tone due to brain damage before, during, or shortly after birth. To this day, Cook has never received a definitive answer about what caused the brain damage. Some doctors attribute it to preterm labor, while others say it may have been caused by the delivery.
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Lexi Cook
Bo Cook in physical therapy.
Shortly after Bo’s diagnosis, the family was referred to neurologists and geneticists. Since Bo was still so small, they arranged for most of his care team to visit their home, including physical therapists, occupational therapists, speech therapists, vision therapists and massage therapists.
“There wasn’t a lot of hope when the doctors gave us the diagnosis,” Cook, who eventually quit her job to become a full-time stay-at-home mom, says. “Most doctors told us he would probably never see, never speak, and would likely never walk. That’s all we heard: bad news after bad news. Every doctor’s appointment seemed to bring more negative updates. I’d go to the pediatrician, and it was like, ‘Oh, now there’s something else wrong. We need to send you to this specialist.’ “
“It was overwhelming,” she continues. “There was no hope. For so long, it just felt like a mountain of bad news.” The mom adds, “I just remember thinking, ‘How am I going to give him the life that I’m supposed to give him?’ “
But then, during an early appointment, something changed. Cook, now 29, remembers meeting a doctor who said something no one else had. He told them that the brain could rewire, that new pathways could form. While the doctor wasn’t overly optimistic, he did offer a glimmer of hope.
“For the first time, someone told us there was a possibility,” Cook recalls. “That was all I needed to hear. After that, I walked out of there thinking, ‘Okay, there’s hope. We’ve got this.’ “
Lexi Cook
Bo Cook with his mom Lexi.
Cook held onto those words, along with the support of her family, through days when she felt hopeless. One moment, she recalls feeling overwhelmed with anger as she planned Bo’s birthday party, knowing he’d never experience it. But when the day came, her family had a full celebration ready. They danced, sang and made it a special occasion.
Then, shortly after Bo’s first birthday, Cook got her first glimmer of hope. One day, when Bo was about 1½ years old, he was sitting in his high chair while Cook fed him. As she turned to do something, the spoon passed in front of his face. To her surprise, Bo’s eyes followed the spoon. Cook’s jaw dropped in disbelief. She couldn’t believe it.
“I had baby food all over the carpet,” she laughs. “I was jumping around, yelling, and I think I scared the crap out of him. But it was just one of those moments where, for the first time, he saw the spoon and followed it.”
From that point on, the milestones continued. One day, she noticed Bo, who would sit in the W position on the floor, starting to move toward her. To this day, Bo doesn’t crawl. If he’s on the floor and needs to get around, they call it the “frog hop” because he pushes forward with his legs hopping behind him.
“We’ve had lots of ups and downs, but learning to roll with the punches and quickly adapt has been a game-changer,” the mom says. “When you have children with disabilities, every single day is different. Some things that worked yesterday no longer do, or you walk into a doctor’s appointment ready for one thing, and it turns into something completely unexpected. Being able to quickly pivot and change direction has been essential to staying afloat and moving forward.”
Around this time, Cook began sharing Bo’s journey on TikTok. Her first video, featuring her trying shoes on Bo because his braces made it difficult to find shoes that fit, went viral, amassing over 3 million views. The video flooded her inbox with messages from other parents, many of whom said, “My son has the same thing your son has. You just gave me so much hope. I wasn’t doing okay. Thank you.”
As the years passed, and Bo, now 7, started public school, Cook continued to share occasional videos, showcasing both the milestones and the challenges. One of the most significant moments came when Bo took his first steps at 3½ years old. The video of that moment has since garnered over 2 million views.
Just a day or two after posting the video of Bo walking, Cook’s husband came home and noticed she was crying.
Lexi Cook
Bo Cook learning to walk.
“I said, ‘You have to read these comments. Look at this!’ And I showed him the messages from so many people who shared their stories,” Cook says. “People saying, ‘I have cerebral palsy, and I wasn’t supposed to walk. Now I’m a lawyer.’ It was incredible. I just sat there reading the comments, and we both cried. I said, ‘Listen to this one!’ It was so moving to see so many others sharing their experiences with us.”
“I was told that he was never going to see my face. I was told that. As a mom, you’re thinking, ‘Oh, I love my son so much, and he’s never going to see me. He’s never going to see my face,’ ” she adds. “So, that walking video — it was a big moment. One, because he was walking, but two, because he could see me. He could see his mom, and he could get to me. He knew where I was. Honestly, just him seeing me — it was everything. He still can’t see well — he doesn’t see well at all. He has his cane at school, and he has a full-time aide who helps him. But he’s getting there, and he’s doing it in his own time.”
As Bo continues to grow, every three months, the family travels five hours one way for his treatments. They visit Primary Children’s and Shriners Hospitals, where the doctors and staff they’ve met at both places are absolutely phenomenal. In December 2023, Cook shared that a doctor at Shriners Hospital performed a life-changing surgery on Bo, lengthening all the muscles in his legs — from his Achilles tendon up to his groin — which has made a huge difference in easing the tightness in his body.
At school, his full-time aide has become his best friend. During the day, he’ll get pulled for occupational therapy, physical therapy and vision therapy.
“Every single person we have met along our journey has made such a genuinely positive impact on our life, and we couldn’t be where we are without them,” the mom says. “We understand at times their jobs are long, monotonous and exhausting, but for families with children with disabilities, we believe their jobs are the most important in the world.”
“The saying is true — it takes a village and we are so grateful for every single person who has joined our village along the way,” she adds.
Lexi Cook
Bo Cook with his family.
Every March, during Cerebral Palsy Awareness Month, they invite all their family and friends over. They create green shirts that say “Go for Bo” and do a big walk around town. If Bo wants to walk with them, he will; if he wants to ride in the side-by-side, they’ll ride. After the walk, they have yard games and throw a big party to celebrate.
She also loves watching her younger son, now 3, help Bo — who was also recently diagnosed with autism — put on his braces in the morning. He’s always eager to assist if Bo needs help getting up, too.
Lexi Cook
Bo Cook wearing a Go for Bo shirt.
“I would never change this experience, even if someone offered me a billion dollars,” she says. “I wouldn’t change Bo or make him ‘normal.’ I wouldn’t take that offer. But, yeah, it was hell and back to get here. Two things can be true — I love that you can grieve and still love, have hope and be angry. You can ask, ‘Why did this happen to him? Why us?’ But then I think, ‘He’s the coolest kid in the world.’ Two things can coexist, and I’ve had to learn that over the last few years.”
Read the original article on People
