A Wisconsin mom captured a cute moment with her newborn, not knowing a life-changing diagnosis was about to devastate her family.
Alexa, 26, and husband Dan, 27, (@adventures.of.mommy), who do not share their full names for privacy reasons, posted a short reel on Instagram of their then 2-month-old daughter’s signature babble.
“[She was] beginning to babble up a storm,” Alexa told Newsweek. “But something really special was her default sound. She liked saying ‘Grrr’—it was just too cute to pass up recording.”
But what came next would upend their lives. Just two weeks later, despite being vaccinated, Lydia contracted meningitis.
She spent over 50 days in the Pediatric Intensive Care Unit (PICU) with a 25 percent chance of survival.
The infection resulted in the loss of more than half of her brain matter and caused her to lose most of her previously acquired skills.
“As parents, we were rocked to our cores in a way that left us numb and worn out,” Alexa told Newsweek.
Now approaching her second birthday, Lydia has been diagnosed with spastic quadriplegic cerebral palsy—a severe form of brain injury that affects all four limbs and her trunk, significantly impacting mobility and muscle control.
“She has to work five times harder to do things I take for granted,” Alexa said. “She’s spent over 200 hours in therapy just trying to master the ability to hold her own head up.”
Perhaps most heartbreaking of all for her family, Lydia’s once joyful baby sounds have mostly gone silent.
“Her voice was stolen from her, and the iconic ‘Grrr’ never returned,” Alexa told Newsweek. “But she is beginning to vocalize more and more. Just last week she named her new rhino stuffed animal ‘Guah’ (goo-ahh) all on her own.”
That small vocal milestone has stunned even Lydia’s medical team. Her neurologists now refer to her as a “medical miracle,” a label her mom takes to heart.
“It’s hard to stand idly by as a parent but we really try to keep a positive outlook,” Alexa said. “I wholeheartedly believe our optimism—oftentimes rooted in delusion—is at play.”
Determined not to accept the limits of current treatment, Alexa and Dan have sought cutting-edge interventions.
Lydia now receives stem cell infusions every six months—the next scheduled for early November—and participates in therapies including photobiomodulation (red light therapy) and pediatric therapy intensives. None of it is covered by insurance.
“It’s all out of pocket which seems to be our greatest limitation in maintaining this level of care for Lydia,” Alexa said.
Still, she and Dan continue to fight, and document their journey online in hopes of raising awareness.
“We’re documenting Lydia’s entire miraculous recovery on our social platforms in hopes of bringing more attention to these options that can be life changing,” Alexa said. “Her leaps so far have been awe-inspiring.”
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