Rokas Zalaga is like many 5-year-old boys.
He enjoys to run and play on his scooter, and his favorite superhero is Spiderman.
But, unlike most kids, Rokas was born with a Goldenhar Syndrome – which is as rare as one in 25,000 births, according to a Northwell Health release.
In March, Rokas, from Lithuania, received the first phase of his facial reconstruction at the Cohen Children’s Medical Center to mend facial deformities caused by his syndrome.
Goldenhar is the genetic condition recently made more well-known by the movie and book “Wonder.” It mainly affects the development of the eyes, ears and spine, according to Northwell Health.
Unlike Auggie in “Wonder,” Rokas’ condition only caused deformities on the right side of his face. However, Rokas’ conditions were more severe than those of the fictional Auggie, according to the release.
Rokas lacked a proper jaw bone and his tongue rolled back when he tried to sleep, which made breathing almost impossible.
Rokas was also born with a right cleft lip and palate that was fixed as an infant.
With the help of Dr. James Bradley, a pediatric plastic surgeon at Northwell, Rokas can now breathe on his own – without the tracheostomy he used for many years.
Bradley is involved with an organization called NextGenFace Foundation.
NextGenFace helps families of children with craniofacial conditions by helping identify a comprehensive approach to treatment.
Rokas situation was introduced to the foundation by the wife of a doctor in New York City, who is also involved with NextGenFace, that has a friend in Lithuania who told her about Rokas’ situation, according to Northwell.
Bradley agreed to treat Rokas, and Northwell President and CEO Michal Dowling agreed to provide pro bono surgery and treatment for Rokas at the Cohen center, according to Northwell.
To repair Rokas’ breathing, Bradley removed one of Rokas’ ribs during surgery and created a rib graft with both bone and cartilage to fashion a joint.
“Rokas will need a series of surgeries on his face to further minimize the deformities created by the combination of Goldenhar Syndrome and cleft palate,” Bradley said in the release. “Rokas and his family are part of our family now; we are planning for a return trip to Cohen in six months for more surgeries.”
Rokas’ mother, Ruta Zalaga, said she’s grateful for the care given by the Northwell team.
“Every child deserves to have a life with the best chance for happiness and health,” Zalaga said. “Thanks to everyone here at Cohen, my son Rokas is finally having his chance.”