She was told everything would be fine. She thought he was just sleeping. But when Janette Perez gave birth to son Uriel Jacob, now 6, the newborn’s arms and legs were so pretzeled that the clothes and shoes she had already bought for him wouldn’t fit.” When he was born he was only moving his eyes and his head only,” said Perez, 31, and a teaching assistant at Temple Shalom preschool. “He didn’t know he had arms and legs. ”Not long after, she learned he was born with arthrogryposis, a rare disorder causing multiple joint contractures that effects one in 3,000 live births. The condition is thought to be caused from abnormal nerve or muscle development in the womb. The Perez family had never heard of it, nor had the doctor suspected it was present. At her six-month ultrasound, her doctor told her that the baby wasn’t moving She was scared but her doctor told her the baby’s heart was beating and that she had nothing to worry about.”So I was thinking ‘OK, maybe he was sleeping’,” Perez said. “That was my idea.”
The disorder has left Uriel completely dependent on his family for mobility and feeding. Still, he’s doing therapy and improving. He can play video games and can even throw small items as far as several inches. He can also move across the room by lightly hopping and scooting himself along.
“The hard part of this I think was when the doctor told us that my son is going to be in a wheelchair,” she said. “For me it was terrible.”
As a Christian woman and with the prayers she received from members of her church she began to accept her son’s condition and worked to educate herself on the disorder.
But the challenges are far from over. Earlier this month Uriel had his fifth and most serious surgery. Muscle from his chest was taken out and inserted into two parts of his right arm. Uriel has difficulty developing muscles and in its place is fat tissue. The operation is intended to give Uriel some independence and the ability to move his right arm.
“So in the future he’s going to be stronger and he can be able to feed himself,” Perez said. “You know, something for him.”
But it’s expensive, and Perez, with husband Enrique, 42, struggles to pay for the 20 percent of Uriel’s medical expenses that insurance doesn’t cover.
“So many people think that if we have a child with disabilities, the government is helping a lot and it’s not true,” she said. “The only (organization) that helped me is Ricky King.”
She means the Ricky King Children’s Fund, a Naples based nonprofit that helps children in need of medical equipment.
Executive director Jennifer Weidenbruch said this is a common problem and government services such as Medicaid only cover the basic needs of children with disabilities and don’t cover medical equipment costs. Most often the foundation helps families at the lower-income levels who don’t have any personal insurance.
“And I think a lot of it is because they have these children that need constant care,” Weidenbruch said. “And unless you’re a really high income level it’s hard to afford constant care.”
Ricky King became involved when a parent at the preschool noticed Perez carrying Uriel everywhere. With donations from families at Temple Shalom, money raised from her own church, Iglesia Pentecostes Peniel, and $2,500 from The Ricky King Children’s Fund, the Perez family raised approximately $21,000 for the $35,000 van capable of transporting Uriel’s wheelchair.
Despite his physical challenges Uriel has no mental handicap. Next month he’ll be starting the first grade with kids without any disability at Big Cypress Elementary School.
“He’s a little clown in his class,” Perez said. “He’s friendly. Everybody loves him.”
But there are difficult times for Uriel, especially when he sees other children running and playing. Perez can see it in his face that he wants to join them. She has chosen to never discourage him from trying an activity he hopes to do independently someday.
“I think my idea is if I say ‘No, you cannot run or you cannot do this,’ I’m going to stop his idea to try to do it,” Perez said. “I mean, I don’t want to stop that.”
And working towards giving their son more independence is an ongoing goal for the family.
“We ask all the doctors, we always ask our first question: ‘Do you think he’s going to walk?’” And they say ‘we don’t know yet.’ So we’re still working on it,” Perez said. “I mean, it’s going to take a long time but with all the prayers, and all the therapy and all the love, all the good food, all this hassle maybe it’s going to happen one time.”