Caroline Bonilla Miranda, a mother in Bayamon, Puerto Rico, began noticing developmental delays in her son, Emilio, when he was a few months old.
By the time he was a year and a half, Emilio had lost the ability to grasp toys or turn around. He began having seizures.
Now three years old, Emilio has a rare genetic anomaly – FRRS1L – that significantly affects his ability to function. He relies on medical equipment to help him eat and breathe, which means that he needs a continual, reliable supply of electricity.
And in Puerto Rico, still recovering from Hurricane Maria, which hit the island in September of 2017 and knocked power out to large parts of the island for months on end, reliable power isn’t always easy to come by.
A series of earthquakes that hit the island beginning in late December of last year have caused repeated power outages.
When Maria hit, Emilio, still a baby, only needed one machine to help him manage his respiratory secretions. To help him breathe with the power out, Bonilla would turn on her car and use an inverter to give her son the therapy he needed.
Now, it’s harder. Since the earthquakes, Bonilla said, the electricity has been irregular. A nearby power box keeps “exploding,” cutting off electricity to her neighborhood. And when that happens, she worries that Emilio is going hungry.
A Fragile Situation
There are a number of children in Emilio’s position, explained Serafin Soto Caban, who coordinates the Department of Health’s Technology Dependent Youth Registry. Children – which in Puerto Rico, means under the age of 22 – who need a breathing machine, feeding machine, or other electronic resource to survive have had a difficult time since Maria hit the island.
“Since there was no power at their house, they were visiting the hospitals as a shelter and a way to get power to treat their condition,” Soto said. But some hospitals weren’t admitting these children because they didn’t know how they were going to get paid, and some ambulances weren’t picking them up, he said.
In the aftermath of the hurricane, Soto was asked to begin a registry of children throughout the island who depended on an electronic device.
“The government thinks the best place for [these children] in a disaster situation like a hurricane is in the home,” he said. It was just a question of making it possible for them to stay there.
Soto’s department is working with the families of these children to develop an emergency plan that will work whether or not a disaster will allow them to remain in their home. The mayors of the communities where they reside know which families need extra help and can follow up with them.
But a vital part of preparedness for a child who needs a breathing or feeding machine is a generator, to provide a reliable supply of electricity when the power goes out. For many families, a sufficiently powerful generator, which costs several hundred dollars, is an unmanageable expense.
“These are very humble families, low-income families, that are going through all these disasters in Puerto Rico for the last three years,” said Luis David Rodriguez, a Direct Relief staff member in Puerto Rico.
“Power in Puerto Rico is still very fragile,” Rodriguez said. Providing these children with reliable generators “is definitely a no-brainer.”
Less Fear, Greater Certainty
Direct Relief, with the support of AbbVie, is working closely with Puerto Rico’s Department of Health to provide generators for 32 Puerto Rican children under the age of 22.
The generators will mean a reliable source of power during the outages that regularly dot Puerto Rico. Greater safety during a hurricane or tropical storm. Less fear and uncertainty for children and parents alike.
For both Ariam Nicole Calderon, 20, and her brother Luis Enrique Calderon, 19, a generator will mean continuous access to much-needed ventilators.
The siblings – both of whom have a form of muscular dystrophy – couldn’t be more different, said their mother, Marta Rivera. Ariam, who likes to listen to classical music and nature sounds, is reserved and selective, while Luis is “more of a party boy” who loves to do the chicken dance, Rivera said in Spanish.
But both were placed on ventilators after inhaling food shortly after Maria, and need continuous access to oxygen. The new generators are “a huge help” in ensuring the siblings can breathe safely, Rivera said.
Almost all the generators are the same size – 3,500 watts.
But one larger one will go to support Alison de León, a 17-year-old girl whose immune disorder and chemical sensitivities require her to stay primarily in her room, where two purifiers run full-time and she has continuous access to oxygen.
Alison is so sensitive to chemicals in the air that she can be in her family’s living room for no more than half an hour at a time, said her mother, Sara de León.
The sensitivities also require her to eat a careful diet of fresh, organic foods, which means that the family’s refrigerator has to keep working, no matter what.
But Alison hasn’t let her health issues prevent her from developing a deep love for playing and composing music, de León said. She loves the flute and ukulele, and has additional interests in digital art and painting.
She’s even written a song about her immune condition.
But even with the generator, de León worries about Alison. There’s mold in the house, and even a neighbor outside without a mask poses a danger to her daughter. The stress of the earthquakes has exacerbated Alison’s illness.
A small solution
Even in the most straightforward of cases, there’s more to be done, Soto said.
Because of the pandemic, he hasn’t been able to do a full assessment of the needs of children in Puerto Rico, which range from breathing devices to specialized beds. It’s an island-wide problem, he explained.
The Department of Health doesn’t have the funds to purchase all of these things anyway, according to Soto. They rely on donations.
And the demand keeps growing. “Every day, there are more and more children” who need specialized equipment, Soto said.
But for Bonilla and Emilio, a generator will make all the difference in the world.
“Now I can be more at ease if I have a power outage at home,” Bonilla said. “Now I know that [Emilio] won’t be starving. He won’t have any trouble with his breathing.”