From the moment he entered the world, young Kai has faced a relentless struggle against a host of severe health issues, challenges that he and his family will continue to navigate throughout his life.

Kai’s journey began with a sudden rush to the neonatal intensive care unit (NICU) shortly after his birth, his parents, Tawny and Dustin Reyna, shared with the Daily Mail. Kai was born prematurely, tipping the scales at just over two pounds, necessitating vigilant care in an incubator.

“I think it was four to seven hours after birth when we were allowed to go up there and see him because they had to get him stabilized and everything,” Tawny recounted, reflecting on those tense initial hours.

Kai’s early arrival at a mere 25 weeks and six days gestation brought with it a complex mix of hope and apprehension. While the survival rate for such premature births ranges between 70 to 90 percent, the risk of enduring significant, lifelong complications loomed large. Despite extensive medical inquiries, the cause of Kai’s premature birth remains a mystery to his mother.

In the fragile first weeks of his life, now four-year-old Kai encountered numerous critical challenges, including severe brain hemorrhages that struck within just three days of birth. Tawny explained that during these early days, the skin and blood vessels of a micro-preemie are so delicate that even a simple touch can trigger bleeding in the brain.

In his first few weeks of life, Kai, now four years old, endured multiple emergencies, including severe brain hemorrhages within three days of birth. In the first days for a micro-preemie, the skin and vessels are so fragile ‘that even touch can send blood to the brain,’ Tawny explained. 

Doctors told Tawny and Dustin that Kai’s brain bleeds and the resulting damage were the direct cause of his spastic quadriplegic cerebral palsy, diagnosed toward the end of his more than 100 days in the NICU. 

This means the neural pathways controlling Kai’s motor function were damaged, resulting in chronic muscle tightness and involuntary primitive reflexes that fight his voluntary movements.

Kai’s mother calls his daily two-hour standing board a ‘torture device.’ Strapped in with a harness, belt and foot anchors, it forces his body into alignment for meals and activities

Kai also had a serious lung hemorrhage in his first week of life. Then, about a month into his hospital stay, Tawny claims the staff made an error by switching Kai’s fortified breast milk to standard formula, which caused a life-threatening bowel disease. 

This slowed his growth, required antibiotics and risked sepsis. 

During a procedure to insert a drain for his hydrocephalus, the fluid buildup in his brain, Kai experienced his third and final major brain hemorrhage.

That third brain bleed dramatically worsened the fluid buildup and pressure, causing further damage. 

To drain it, doctors planned a shunt, but Kai first needed to grow big enough for the permanent implant. 

At about four months old, doctors implanted a permanent shunt to drain excess fluid from his brain to his abdomen.

All this time, Kai was on a ventilator, getting mechanical assistance to breathe through a tube snaked down his throat.

The formal diagnosis of his severe spastic quadriplegic cerebral palsy, the most involved form of CP, came after the shunt was implanted, just before he was finally discharged from the hospital in May 2022. 

Soon after birth, Kai [pictured with his father Dustin] suffered two major brain bleeds, causing his cerebral palsy, a lung hemorrhage, and a life-threatening bowel disease from a feeding error

Spastic quadriplegic cerebral palsy is a condition caused by brain damage that results in increased muscle tone, referred to as spasticity. 

This spasticity causes stiff, tight muscles and impairs movement in all four limbs, as well as the torso and face. 

It often involves significant challenges with mobility, speech and daily activities, and typically requires the use of assistive equipment and intensive, lifelong therapy. 

Kai undergoes intensive Dynamic Movement Intervention (DMI) therapy to build new brain pathways and address his motor delays and reflex issues. 

DMI is exceedingly expensive, with one three-week intensive course in North Carolina costing $20,000, but it’s the most effective form a therapy for Kai so far.

His father Dustin said Kai has had the ‘biggest progress we had ever seen.’

Kai also receives IASIS Microcurrent Neurofeedback, which uses low-current stimulation to balance his nervous system, calming his overactive fight-or-flight response, very common in children with cerebral palsy, and promoting rest. 

The therapy harnesses neuroplasticity, the brain’s ability to rewire itself, which is especially potent in young children. This creates a critical window to build foundational motor pathways.

The cost of Kai’s therapies is around $100,000 annually, almost entirely without help from insurance 

Research suggests IASIS MCN helps shift dysfunctional brainwave patterns, potentially improving muscle control, focus, and coordination by supporting the nervous system’s ability to reorganize.

Tawny said: ‘Now he talks full sentences because of it.

‘So when doctors see his imaging, they think, nonverbal kid, can’t communicate. And then they see Kai, and then they’re like, Wait, how did you do that? And I’m like, Neurofeedback therapy.’ 

Kai’s cerebral palsy has also caused severe hip dysplasia, pulling his thigh bones 60 percent out of their sockets, a painful condition that risks permanent deformity.

To treat the dysplasia, Kai is strapped into a standing device for two hours a day, something Tawny likens to a torture device.  

The process of getting him into his realignment equipment is exhaustive: he is secured with a chest piece, a strap around his rib cage, another across his lap and his feet are anchored to a board at the bottom to enforce proper alignment. A tray attaches for eating or play.

He also wears ankle-foot orthotics all day to maintain this posture, countering his body’s tendency to extend into patterns that hinder his development. 

The cost of his therapies is astronomical, though, with an annual cost of around $100,000, almost entirely without help from insurance. 

Because of this, Kai’s family has set up a GoFundMe to help raise funds and alleviate some of the financial strain.

Kai undergoes IASIS Microcurrent Neurofeedback Therapy, which uses gentle electrical pulses to balance his nervous system 

Along with the physical and financial stain, the emotional burden is immense. 

His parents are Kai’s constant advocates in an unsupportive healthcare system, all while trying to preserve their own health, marriage, and their daughter’s well-being.

Yet, they persist in pursuing cutting-edge treatments that leverage neuroplasticity, traveling nationwide for intensive therapies.

Tawny said: ‘He has to work hard every single day. He doesn’t get a break. Obviously, he doesn’t know any better, but, someday, he’s going to have to choose to start lifting weights and stuff, if he can, to help build that strength up and keep his momentum going.’

Dustin added: ‘We’re going to try anything and everything, because we just want him to have the most successful life, be as less in pain as possible, and be able to be independent as much as he wants and can be.

‘We set the standard now, though.’