by Melanie Eversley
On a sunny fall morning in New York City, Jaylen Escalera, a giggling toddler with long eyelashes, lifts himself on his hands so he can reach into a toy box.
Unlike other boys, he has six fingers between his two c-shaped hands – one of them cleft – that he uses to support himself. He gazes at the plastic toys in primary colors and stands on two tiny stumps, the result of a double leg amputation.
But on Sunday, Jaylen turns 2, and his parents have a birthday wish: That he will walk on his new prosthetic legs on his own.
“Just the fact that he has his (prosthetic) legs is great,” said his mother, Jessica Gooding, 28, of the Bronx.
Jaylen was born with missing bones in his lower legs, deformed hands and a few other medical issues. Doctors at Shriner’s Hospital for Children in Philadelphia amputated his legs in July because they said the limbs were not functional and the operation would give him a greater chance at being able to walk.
On this morning, he is the only person in the occupational therapy room at the Rose F. Kennedy University Center for Excellence in Developmental Disabilities at Montefiore, in the Bronx, who does not seem to realize he has challenges. He plays, he laughs, and throws tantrums just like other babies. He likes Ritz Crackers, playing with his 4-year-old brother, Julian, and spinning on his rear end.
Many are also hopeful for the little boy who has become somewhat of a social media celebrity. This happened after Gooding began posting about him on a Facebook page geared toward African-American women who wear their hair naturally. These days, news about Jaylen generates thousands of likes and comments. One woman even set up a GoFundMe account to help Jaylen’s family with daily needs.
The parade of doctors that Jaylen has seen have put forth varying diagnoses for the little boy’s condition, which includes failure of the nerves in his lower legs to function and fusion of his fingers. Some say his condition is similar to FATCO (fibular aplasia, tibial campomelia, and oligosyndactyly) syndrome, which causes limb defects and congenital heart malformations.
Eric Fornari, director of pediatric orthopedic education at The Children’s Hospital at Montefiore, has treated Jaylen and said he has tibial hemimilia, a deficiency of the tibia bone in the lower leg, and proximal femoral focal deficiency, which causes a deformed hip and lower leg. He also said Jaylen’s condition was probably the result of a spontaneous genetic mutation. All of the conditions are rare. Limb malformations take place in about one of every 1,000 infants, according to the National Institutes of Health.
He said children are determined and believes Jaylen will be able to take his first unaided steps on Sunday because he has “the ability to conquer any challenge that’s thrown at him” with family support.
“They figure out what they want to do and how they’re going to do it regardless of any obstacles in their way,” said Fornari. “Jaylen’s mentality and temperament is strong and his motivation is very strong for a child that’s only 2-years-old.”
Jaylen’s occupational therapist, Timothy Conly, said he sees no reason why the toddler’s upbeat spirit won’t help him take a step on his birthday. “If he’s motivated for it, there’s no reason why he shouldn’t be able to do it,” he said.
Gooding said when doctors told her almost six months into her pregnancy that Jaylen was deformed and she should terminate, she sought out new doctors at Montefiore. She cried when Jaylen was born, but she keeps moving forward.
Gooding and her sons share a three-bedroom apartment with her mother, sister, and brother at a northern corner of the Bronx not far from Westchester. The neighborhood’s quiet streets and frame homes look as if they belong in a suburb, but she said that beneath the picture-perfect atmosphere are neighborhood troubles, such as crime.
Gooding and Jaylen’s father, Israel Escalera, who lives with his own family, hope they can get a place of their own and a car – both of which will make the chaos of their lives easier. Gooding has her eye on Delaware, which would be closer to Jaylen’s doctors at Shriner’s.
It is clear the couple has raised their children with care. As Gooding sits in her kitchen explaining Jaylen’s condition, Julian approaches and says “Excuse me,” as he asks her if he can have oatmeal.
Jaylen has none of the reticence that one might expect in a little one with physical challenges. Upon meeting someone, he stretches out his two-fingered right hand to say hello. He says “appoo” when he wants an apple and “pikcha” when he wants a visitor to take his picture of him.
Gooding says she and Escalera don’t want Jaylen to think he is different. They started him off early putting blocks and other large objects in his hands so he could get used to the feeling, and ignore people who stare in public.
“I just want him to embrace who he is,” Gooding said.
