You’ve heard about Hurricane Irma and Maria that hit Puerto Rico, destroying schools, hospitals, and leaving the island without power. You’ve seen the devastating photos. Millions of people living there were affected. One community that was hit especially hard was the rare disease community. When the power went out, Carmelo Diaz, who suffers from amyotrophic lateral sclerosis (ALS) was left in a horrifying situation.
ALS in a progressive neurological condition, which you may have been exposed to through the viral “ice bucket challenge” which circulated the internet a few years back. It kills nerves in the spinal cord, brain stem, and brain. While the patient is cognitively still the same, they slowly lose control over their muscles. Eventually, the condition may interfere with a patients ability to breathe.
There’s no cure for ALS, although there are various support treatments. To read more about this rare disease, click here.
Carmelo Diaz’s ALS emerged in 1988. As it progressed, Bere, who was his high school sweetheart, wife, and the mother of his children supported him. He lost the ability to walk, but she was there to assist him. When he could no longer speak, they developed a secret language of sorts. He would blink and make facial motions, and she could translate complicated thoughts. Carmelo was unable to work, and Bere eventually needed to quit teaching in order to provide constant care. The family hit rocky financial times. Though it was tough, they managed. But this is all before the hurricanes.
When Hurricane Irma hit in early September, the Diaz’s fell in the the two thirds of the inhabitants left without power. Half the cell phone towers were collapsed as well. Their apartment had flooded, and their doors were badly damaged. They knew they had to leave, so they moved in with a friend. This situation was far from ideal, but tided them over for a little while.
Then came Hurricane Maria.
Although hurricanes are not new to Puerto Rico, which is vulnerable to tropical storms, the island had never seen destruction like Maria. Bere had to think resourcefully keep Carmelo alive, improvising car batteries to power up his ventilator. She was afraid to go outside, because of the state the storm had left their streets in. She was afraid Carmelo would die.
Milagros Padilla, Carmelo’s sister-in-law, saw that the current strategies were not sustainable. She moved their fight to the internet, reaching out for help. That’s how she came across Team Gleason, the organization that would change their lives.
Steve Gleason, from the New Orleans Saints, was diagnosed with ALS 6 years ago. He and his wife established the non-profit Team Gleason, leveraging his fame to help other patients with ALS. Team Gleason both funds cure-oriented research, and advocates for patients with the disease.
Team Gleason already had people like Carmelo in their mind– they knew there must be ALS patients trapped somewhere on the hurricane-ravaged island. When Team Gleason heard about Carmelo’s story, they knew they needed to help.
In the middle of October, Team Gleason got in touch with American Airlines. Since it’s the airline Steve Gleason uses, it was equipped for patients with ALS. A day later, the Diaz’s were flown to New Orleans, expenses covered.
While staying in Puerto Rico was impossible, leaving was also frightening. The Diaz’s had never lived anywhere else. Because of Carmelo’s condition, it was difficult to even travel.
The whole ordeal and trauma of the situation took a toll on Carmelo’s health. He lost weight, strength, and nutrients. He was immediately hospitalized. Early on, Steve Gleason came to visit Carmelo. He described the connection as intense, and spoke of how inspired he was by Carmelo and his family’s strength.
Carmelo’s health improved since that visit, and he left the hospital after a few days. He now lives in an apartment with his entire family– First Lake Properties donated a month of use. It’s a tight squeeze for his family is six, but they’re happy to be there. Camilo is happy to be in New Orleans as well– he’s found better medical care. The family’s future is uncertain. They have no permanent home, transportation, and the ALS care is expensive. Still, Carmelo explains through blinks, he wants to watch his kids grow up. He, and his devoted family, will fight to survive.
