How coordinated care at UW Health Kids protected her vision, her skin and her bright future
When Bianca — often called “Bink” — was born, her parents, Deanna and Brandon Latino, immediately noticed the deep purple port wine stain across her face and back.
While many birthmarks only involve skin and are harmless, this type can signal Sturge-Weber syndrome — a rare condition that affects the skin, eyes and brain.
When Bink was 10 months old, Deanna and Brandon turned to UW Health Kids in Madison, Wis., home to one of the region’s only birthmarks and vascular anomalies programs and one of 27 Sturge-Weber Centers of Excellence in the nation.
With more than two dozen specialists across many fields, including pediatric dermatology, neurology, neurosurgery, plastic surgery, ophthalmology and radiology, the team provides expert diagnosis and treatment for complex vascular birthmarks. They’ve helped Bink grow, thrive and surprise everyone with her strength.
Diagnosis and early care
Sturge-Weber is caused by a genetic mutation early in fetal development. It isn’t inherited and currently cannot be detected before birth. The birthmark results from activation of a gene that produces excess blood vessels in the skin and sometimes in the brain or eyes, potentially leading to seizures, glaucoma and developmental differences.
As a neuro nurse, Deanna understood how serious it could be — yet she had never heard of the condition.
“Even though I’m clinically trained, when it’s your child, all that knowledge disappears and you’re just a mom who’s scared,” she said.
The family is from Roscoe, Ill., so they started Bink’s care at a children’s hospital in their home state. At two months old, Bink began pulsed-dye laser treatments to target excess blood vessels in her skin and keep it healthy. At five months, she was diagnosed with glaucoma. But the biggest unknown remained how her brain was affected. Because imaging required anesthesia, which isn’t recommended in infancy unless medically necessary, the only thing they could do was wait and watch for new symptoms.
A frightening first seizure
At nine months, Bink had her first seizure and was airlifted to the children’s hospital. Imaging confirmed Sturge-Weber affecting the left side of her brain.
“As a neuro nurse, looking at her scans was shocking,” Deanna said. “The left side is much smaller and the vascular involvement is significant.”
Her care was competent, but felt fragmented. Deanna and Brandon wanted a team that could see the full picture and treat them as true partners.
Finding UW Health Kids
Through the Sturge-Weber Foundation, they learned about the Birthmarks and Vascular Anomalies Clinic at UW Health Kids in Madison, one of the region’s leading centers for children with complex vascular conditions. The program brings together pediatric specialists in dermatology, neurology, ophthalmology, radiology and more.
At 10 months, Bink met pediatric dermatologist Dr. Lisa Arkin, pediatric neurologist Dr. Adam Kney, and pediatric ophthalmologist Dr. Yasmin Bradfield and her parents decided to move her care to Madison.
“The difference was night and day,” Deanna said. “They collaborate. They respect us. It was everything a family like ours needs.”
For the first time, she felt hopeful. “I felt like people really saw Bink— not just her scans or her birthmark, but who she was and who she could become,” Deanna said.
Many UW Health Kids specialists are also researchers working to change the future of care for kids with Sturge-Weber syndrome. They are studying the GNAQ gene change that causes Sturge-Weber syndrome to help develop better treatments. They’re also creating safer MRI methods for newborns so doctors can spot signs of the condition earlier and guide care sooner.
Dermatology: Protecting Bink’s skin — and honoring who she is
Historically, dermatology is often the first stop for families in the Birthmarks and Vascular Anomalies Program.
“Today, we treat the skin aggressively in the first year to keep it healthy,” Dr. Arkin said. “Every baby is beautiful, and our job isn’t to change this — it’s to prevent progression of the birthmark.”
Laser therapy works best early in life, when skin is thinnest and blood vessels respond readily. Early treatment requires trust: Many visits, uncomfortable procedures and close communication.
“Doctors don’t have all the answers,” Dr. Arkin said. “We have data, but families bring context. We make decisions together.”
Throughout Bink’s care, Dr. Arkin has been an advocate across specialties, making sure every clinician understands Bink as a whole person.
“She treats Bink like a whole person, not a collection of medical problems,” Deanna said of Dr. Arkin.
Ophthalmology: Saving her sight
Despite medication and monitoring, the pressure in Bink’s eye remained too high and could lead to blindness.
Shortly after her first birthday, she underwent surgery to place a glaucoma tube shunt — a tiny drain placed in the eye to help lower pressure and protect vision.
In December 2023, a viral illness triggered stroke-like symptoms for Bink. Imaging revealed a detached retina caused by abnormal vessel growth. Thanks to quick action by Dr. Bradfield — and low-dose radiation therapy to stabilize the retina — Bink’s sight was saved.
Neurology: Treating the child, not just the scan
As a former neuro nurse, Deanna approached neurology with deep knowledge — and concern. She and Dr. Kney often reviewed imaging together.
“He would say, ‘This looks really significant,’ and I’d agree,” she said. “But then we look at Bink, and she’s doing so much more than you’d expect based on those images.”
Instead of relying solely on scans, Dr. Kney also considered how Bink was functioning.
“Another neurology team might have pushed for surgery right away,” Deanna explained. “But Dr. Kney listened. He looked at the scans, and then he looked at our daughter.”
For some children with uncontrolled seizures, brain surgery can be life-changing. But Bink's symptoms didn’t justify that intervention.
Today, she no longer needs daily seizure medication, though fevers can still trigger seizures and temporary stroke-like episodes. Her stability reflects thoughtful, individualized care — and a Sturge-Weber team her family deeply trusts.
A multidisciplinary team built on skill — and trust
UW Health Kids’ vascular anomalies team blends the strength of a small, collaborative program with access to specialists across dozens of disciplines. A nurse navigator coordinates appointments and imaging so families can meet multiple specialists in one visit.
“We have incredible specialists — many also researchers — who know this disease can show up differently in the skin, brain or eye, even though it all comes from the same gene,” Dr. Arkin said. “That helps us personalize care. We listen to one another, and we center every decision on what’s right for the patient.”
The team also cares for adults with Sturge‑Weber, so patients never age out of the program or have to start over with new specialists. That lifelong perspective strengthens care at every stage.
Tiny, but mighty
Bink turned 8 in early 2026. She calls the laser marks on her face her “superhero polka dots,” walks into school confidently and brings humor to every appointment.
“She’s tiny, but mighty — sweet and spicy,” Deanna said. “She bounces back like nothing ever happened.”
Through every emergency, every unknown and every milestone, one thing remains constant: “UW Health Kids is our home base,” Deanna said. “We trust them completely. Bianca is thriving today because of their care.”