The power of advocacy for Baelah: From detrimental diagnosis to miraculous healing

If you met 6-year-old Baelah or watched her pageant videos, you’d never guess the challenges she’s overcome medically, developmentally and emotionally. Her journey is one that her mom, Brynessa Taylor, says is nothing short of miraculous, albeit mysterious — to both her and Baelah’s doctors.

Baelah was born with a blood disease and a spinal malformation but was otherwise a typical baby. At 6 months old, however, she wasn’t reaching milestones that other babies were, like keeping eye contact, babbling, responding to her name, playing with toys or acknowledging her surroundings.

When Baelah started walking at 14 months — an age-appropriate milestone — Taylor assumed the other delays would resolve with time and physical therapy. After a year of therapy and no marked improvement, Baelah’s doctor recommended seeing a specialist.

“The specialist had to sit me down and tell me that what he was about to say would be one of the most critical conversations I’d have in my life,” Taylor says. “He told me that Baelah was not OK. He said she was more than a year behind — more than half her life because she was only 18 months old — and that if she didn’t get comprehensive neurological and therapeutic help soon, she’d never grow up or never have an opportunity to develop properly.”

Thinking about the conversation with the specialist still brings Taylor to tears.

Baelah was diagnosed with global developmental delay, a broad diagnosis that ranges in severity and doesn’t have a cure. Baelah’s condition was so severe that the specialist urged Taylor to move from rural Oregon to Washington state for better access to care.

A life-changing move

“I went from sort of this denial that my baby needed intervention to moving mountains to get her anything that would give her the best chance at a normal life,” Taylor says.

Within three weeks, Taylor, a single parent, made the move to Pierce County. Amid the unknowns, she had comfort knowing she would be closer to family.

Armed with a long list of referrals for physicians and specialists at Mary Bridge Children’s, their first appointment was with Baelah’s new primary care physician, Heather Cooper, MD, from Mary Bridge Children’s affiliate clinic, Woodcreek Pediatrics.

“I found out that Dr. Cooper previously worked with that specialist from Oregon. At our first appointment, I could tell that we were in good hands,” Taylor says. “Everyone took the specialist’s suggestions seriously and agreed that we needed to act quickly for Baelah. It was Dr. Cooper who really helped make Baelah’s care at Mary Bridge so seamless with all the specialists we needed to see.”

Within a matter of weeks, Baelah was scheduled with neurology, speech, occupational and physical therapies at Mary Bridge Children’s Therapy Services – Puyallup, as well as fittings for orthotics and leg braces from Mary Bridge Children’s in-house prosthetics and orthotics department to help correct her gait. Taylor never missed an appointment and soon began seeing the fruits of her labor: Baelah was forming connections with her therapists and making little improvements.

“The bond they had with Baelah was so incredible — I just had to sit back and watch them do their thing,” Taylor says. “Nobody had ever gotten through to her until we met our Mary Bridge therapists.”

When the COVID-19 pandemic hit, Baelah’s therapies changed to virtual appointments, which allowed her to stay on track with her care plan and therapy goals.

Significant strides

Taylor isn’t sure what clicked, but after many months of intense therapies at Mary Bridge Children’s, she noticed that Baelah was becoming a different child.

“I remember the first time she acknowledged another child,” Taylor recalls. “She spent her whole life not noticing anyone around her, but one day she stopped on the playground, turned around and tried talking to another kid.”

That encounter was only the beginning for Baelah. She started talking, running and dressing herself. She even started competing in beauty pageants.

Baelah loves dancing and performing

At a follow-up neurology appointment, providers noted how significant Baelah’s improvements were.

“The neurologist couldn’t believe it and said only 10 percent of kids with this diagnosis come out of it or make the improvements that Baelah did,” Taylor says.

Nobody knows if it was the therapies or the doctors, but Taylor says she knows one thing: If they didn’t have access to the multidisciplinary care teams at Mary Bridge Children’s fighting for her daughter at every turn, Baelah wouldn’t have made progress.

“I’ve truly never received this kind of care anywhere,” Taylor says. “It’s not just the special or extra stuff — it’s the everyday stuff like how our doctors never rush us or make us feel inconsequential, or the schedulers who fight for Baelah to get the appointments when she needs them, or the receptionists who remember our names every time we walk into clinic. I’ve become friends with them; they’ve become people I can share jokes with or get hugs from on hard days.”

Taylor says in addition to Baelah’s medical team, her family-patient advocates and nurse navigators were angels in disguise, “magically” navigating insurance denials or challenging appointment needs.

Advocating for kids

Taylor always champions Baelah and wants the best for her, but admits that it took that specialist in Oregon to get her to understand how much intervention was needed. In turn, she’s now a huge advocate for other kids because she knows what kind of help is available.

“I don’t want any other kid getting missed or not getting help they need,” Taylor says. “There is help — it can be hard to find and even harder to admit that your child needs help, but every parent just needs to spit it out, even if it comes with a label. These are real medical conditions, but they don’t define our children.”

Today, Baelah is a happy and healthy 6-year-old who, by all appearances, is a typical kid who enjoys dance, pageants, school and spending time with her family. She’s graduating from some of her therapies at Mary Bridge Children’s and is at the top of her class for reading and vocabulary, and except for social-emotional support at school, is learning alongside her peers.

“I’m convinced that Mary Bridge has the best programs and specialists in the country, right in my backyard,” Taylor says.  “Without Mary Bridge, I wouldn’t have the daughter I have today, and for that, I’m so grateful.”

Mary Bridge Children’s partners with families like Baelah’s to provide multidisciplinary and patient-centered care for all patients. To find a physician or specialist, visit our Find a Provider page.