Her son’s condition worsened rapidly. Not only did he become increasingly hobbled, but Jhordens, who had learned how to read and do math by age 3, began having serious difficulty speaking and writing.
“It was so devastating to my family that all those abilities he had one day just turned off,” Ms. Bido said.
She and her husband, Erick Rivas Rodriguez, took Jhordens to a hospital on the military base where they lived in Nagua, in the Dominican Republic. Ms. Bido, 41, is a military sergeant in the country’s Air Force.
In March 2019, tests revealed that Jhordens had adrenoleukodystrophy, or ALD, a rare genetic condition that damages the membrane that insulates the nerve cells responsible for brain function.
Ms. Bido recounted the crushing moment she was told that the disease would sap away her son’s ability to speak and walk, to see and hear — and that Jhordens was likely to live for only one more month.
“I never accepted this,” she said. “The prognosis of life is something only God knows.”
Still, Ms. Bido knew she and Jhordens needed a miracle. His best hope lay with emergency treatment in the United States, but her family could not afford a humanitarian visa to make the trip. They sought financial help from friends and extended family before casting a wider net, plastering fliers around town, knocking on doors, even sitting down for radio interviews, all in pursuit of donations.
In September 2020, the Bido family procured for Jhordens a humanitarian parole, an urgent, temporary period of admission granted by the U.S. Immigration and Customs Enforcement. He and Ms. Bido traveled to Maria Fareri Children’s Hospital in Valhalla, N.Y., where doctors started him on a series of medications and surgically inserted a type of feeding tube used to administer medication and liquids.
The family has since settled into a new reality. Ms. Bido rents a room in an apartment building in Yonkers. In April, Jhordens’s sister, Frannelys Bido, 21, came to the United States on an emergency medical visa to help care for her brother.
Jhordens, who is no longer able to speak, can utter only a few sounds. He communicates by raising his right hand to say yes; not raising his hand means no. Though he is still able to taste and swallow food with his mouth, everything he eats needs to be liquefied. He has no dietary restrictions — Ms. Bido said he preferred rice and beans and other foods with strong Dominican flavors — although, like many children his age, he can be picky.
The Bidos receive help from the Hispanic Federation, one of nine beneficiaries supported by The Neediest Cases Fund’s 111th annual campaign. Hillside Food Outreach, one of the Hispanic Federation’s member agencies, delivers groceries to the Bido family each month; Hillside supplies groceries to those who cannot access food pantries or who have illnesses for which they need special food.
“The agency that brings food monthly is very vital, very necessary,” said his sister, noting that the workers’ compassion extended beyond the simple task of delivery. “They are very happy to see Jhordens. They arrive with food and hug Jhordens, give him kisses.”
Despite all that Jhordens has been deprived of, his mother said, he is often in good spirits; his ebullient personality, while muted, is still perceptible.
Ms. Bido is now back in the Dominican Republic, where she lives with her husband and their youngest son; she returned there last year to renew her visa, but hopes to be back in New York early next year.
Ms. Bido desperately wants to find a way to reunite her family, though she said she knew that Jhordens’s quality of life was far better in America than it would be in the Dominican Republic.
Jhordens’s sister has become his primary caretaker, helping him get ready for school each day and tending to his needs when he is home. On weekends, he enjoys going to parks or other outdoor destinations.
Her presence has given Jhordens “life, peace, security,” his mother said.
To navigate through the nightmare of the past few years, Ms. Bido said she had leaned on her faith, finding strength she never knew she had. She hopes others facing an unthinkable situation like hers can summon equal fortitude.
“Other parents that have a diagnosis like this and don’t know what to do, I will encourage them not to give up,” Ms. Bido said. “God allows us to persevere. If we try, we can be victorious.”
For those who wonder how she did it; how she stayed resolute; how she was able to maintain her faith; or how she had been able to carry her son up to their second-floor Yonkers apartment, an almost daily ritual, she has an answer.
“I do this easily,” Ms. Bido said. “He’s heavy but not that heavy — because I’m carrying love. So it’s not that heavy.”
Donations to The Neediest Cases Fund may be made online or with a check.
