By: Sharon Aron Baron
In February of 2013, 58-year-old Julieta Zepeda was riding in the car with her husband Gerardo at the wheel and her mother Josefa in the back seat when she experienced a pain in her right arm unlike anything she had ever experienced before.
The pain was so excruciating, going from her shoulder to her arm, that she screamed at her husband to call 911.
Gerardo frantically asked her what was wrong as he pulled the car over near a drugstore in Sunrise. Julieta and her family thought she was experiencing a heart attack. After Gerardo called 911, an ambulance arrived. Julieta was wobbly on her feet. The paramedics took her blood pressure and found it to be extremely high. By the time she got to the hospital, her arm had gone numb, and the doctors believed she was having a spinal stroke. During an exam, Julieta tried moving her legs but found that she could not. Within hours, she was paralyzed from the neck down with no feeling in her arms or legs.
After undergoing CAT scans and MRIs, Julieta received a diagnosis of transverse myelitis, a neurological disorder caused by inflammation across both sides of one level, or segment, of the spinal cord.
According to the National Institute of Neurological Disorders and Stroke, transverse myelitis occurs in adults and children, in both genders, and in all races. No familial predisposition is apparent. The disease tends to occur between the ages of 10 and 19 or between the ages of 30 and 39. Although only a few studies have examined incidence rates, it is estimated that about 1,400 new cases of transverse myelitis are diagnosed each year in the United States, and approximately 33,000 Americans have some type of disability resulting from the disorder.
“There are so many things that can cause this, but with me they couldn’t find anything,” Julieta said. At therapy, she has learned that her ailment is not that common. She said therapists have seen some cases, but they are typically mild. “I was pretty lucky that it didn’t affect my breathing because they put a tube in you.”
Both Julieta and her husband Gerardo are from Fremont, California. They moved to Coral Springs 26 years ago because their son, Elgin, suffered from allergies and asthma, and they believed the climate in South Florida would be better for his health. Before they moved, Julieta researched whether they should move to Miami, Coral Gables, or Coral Springs. Eventually she chose Coral Springs because of the great schools.
Their son graduated from American Heritage, and their daughter, Jackie, graduated from Marjory Stoneman Douglas. Now married for 41 years, the couple get by on government assistance, which provides just enough money to pay their basic bills.
Four years after the initial diagnosis, Julieta remains paralyzed from her chest down and confined to a wheelchair. She has very limited use of her hands and arms. Once a quick typist, she can now type only one letter at a time, which is a very difficult change to accept for someone who worked for the Sun Sentinel for 16 years.
Gerardo now takes care of Julieta 24 hours a day. The only time he leaves her side is to run to the grocery store or pharmacy for her medications. Because she does not have the strength to lift herself or stand and they cannot afford a wheelchair–accessible van to transport her anywhere, she must rely on a public paratransit system (a special transportation service for people with disabilities), which requires 24–hour advance notice and costs $3.50 per person for each leg of the trip. For instance, when Gerardo needs to accompany her and they need to visit the doctor and then stop for groceries, the trip costs $21.00. But that is not the most difficult part. These transportation vans, which can lift her motorized wheelchair, typically make her wait long amounts of time to drop her off or pick her up.
“It gets to be kind of hard because when you ask them to come, they will be there sometimes an hour and a half after. Sometimes they’re running late because they have other pickups. They have to go all over,” said Julieta. Recently, she visited Pembroke Pines Mall, and she asked to be picked up at 4:30. She did not get home until a 7:45 that night because the van had other people to take home.
For Julieta and Gerardo, there is no more spontaneity anymore. Their family used to enjoy taking trips to the beach to watch the ocean, and Julieta liked to take walks and dance. However, being confined to a wheelchair for the last three and a half years has meant that Julieta has had to miss many family events, including her grandsons’ basketball and football games and school recognition ceremonies, which she very much looked forward to being a part of.
Gerardo, who is now 59 years old, was once fully able. But he has pulled his back many times and hurt his arms and shoulders transferring Julieta from her wheelchair to her bed, sometimes multiple times a day, and bathing and dressing her. He takes care of her every need, and he cleans, cooks every meal, takes care of the yard work and laundry, and does his best to entertain Julieta and keep a smile on her face.
“My mom was always the one that was driving us around where ever we wanted to go,” said Julieta’s daughter, Jackie.
Jackie said that a wheelchair-accessible van will not change the fact that her mother is confined to a wheelchair, but it will help Julieta find some joy by allowing her to travel outside the four walls she has become accustomed to, experience her family to the fullest, and attend all the celebrations she is missing.
Julieta’s children have started a donation page on Fund Latinos to help raise money to buy their mother a used wheelchair–accessible van, which typically runs around $50,000–$60,000, so Julieta and Gerardo can once again enjoy some everyday activities, such as taking scenic drives, going to the beach, and enjoying dinner dates and their grandsons’ sports games.
If you can help, please donate by clicking here. If you know anyone who would like to donate a wheelchair–accessible van, please contact Jackie Guzman at 954-993-1322.