Life with MS

You may be familiar with the MS Focus Emergency Assistance Grant, which helps individuals with MS in financial crisis. The program provides full or partial financial assistance for urgent needs related to rent, utilities, or medication copays for disease-modifying treatments. A lesser-known goal of the program is to provide aid for people with MS in disaster zones.
 
The latter half of 2017 placed new demands on the program, as wildfires raced across California, and hurricanes tore through the Caribbean, slamming into the southern U.S.  In response, MS Focus released additional funds for disaster relief, and reopened our cooling program (typically only available from February to June) for those without power.
 
Particularly hard hit were the people of Puerto Rico. Hurricane Maria devastated the American island, leaving more than 1.5 million people without power, destroying infrastructure and 80 percent of the agricultural industry, and killing hundreds. The island only had one operational hospital in the wake of the storm. The destruction experienced by the people there is still being felt and dealt with today. For people with MS, the excessive heat, lack of clean water, and difficulty accessing medical care set the stage for serious health problems to further complicate their already precarious position.
 
One woman explains how the chaotic conditions affected her, and how disaster relief through the MS Focus Emergency Assistance Grant helped her. This is Sayonara’s story:
 
My name is Sayonara Cuevas and I live in Puerto Rico. I’m a single mom with two kids, and have been living with MS for the past five years.
 
I was very stable before Hurricane Maria hit the island on Sept 20, 2017. I have family on the U.S. mainland, but could not abandon my home and my kids. I never thought what hit us would be so strong and would affect me so badly.
 
After the storm hit, my condition worsened rapidly because of the lack of water and electricity. I suffer from hemiparesis of the right side, which means I experience weakness, and sometimes paralysis, on half my body, so it didn’t take long before I could hardly walk. I was tired and weak, my body was failing, and all my symptoms were relapsing. I had no cold water to drink, and it was so hot I couldn't sleep at all. I was praying to God to not let me end up in the hospital.
 
I had no money for a generator, and the only thought that came to mind was the Multiple Sclerosis Foundation. After looking for a signal on my mobile phone for an hour and a half, I finally got through and spoke to Derrick Lee.­ I was sensing God's hand on me, and just dared to ask if there was some way the Foundation could help me out. Derrick said, “Yes. Let me talk to my supervisors and try to see how we can help you.”
 
According to Derrick, “We knew we needed to help Sayonara and people like her in Puerto Rico, but the challenge was that normal shipping was suspended, and delivery once something got to the island was completely stopped. At this point, not even the U.S. Postal Service was up and running. We reached out to several contacts and found that if we could get supplies to our friends at Fundación de Esclerosis Múltiple de Puerto Rico, they could help get them into the hands of the people. But how could we get them there? We kept trying, but we thought we would have to wait for normal service to resume.
 
 “After a few days, we caught a lucky break. A staff member and her husband found a courier service that was able to get supplies to their relatives in the U.S. Virgin Islands, which were also severely affected by the storm. We called the company, and they said they could help us get a generator to Sayonara, if we could get it to them.
 “With special permission from the MS Focus administration, I went to the nearest home improvement store that still had generators in stock and purchased one, then hand-delivered it to the courier company. Sayonara’s generator was on its way!”
 
I cannot describe my relief when I was told that MS Focus could help get me a generator. Because of the hurricane damage, it took two weeks for the generator to arrive from Florida, but it got here and I am so thankful for that.
 
My neighbor helped me set it up and it is working great! It is currently December and temperatures remain in the high 80s here. My apartment complex still has no power but, because of this generator, I have cold water and a fan to help me sleep at night, and that's good enough for me.
 
I want to thank the Multiple Sclerosis Foundation for their generous help and a special thank you to Derrick Lee and may God bless you all!