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Rosendo, 2, can't walk, talk or eat. His mom doesn't even know if he can see her, and she is simply ... Praying for a smile Jennifer L. Berghom MULTIMEDIA: A Mother's Love
Mayra Rivera is praying for a miracle. About two months ago, her 2-year-old son, Rosendo Robles, was diagnosed with a rare mitochondrial disease that prevents his body from producing energy. He cannot swallow food, cough or even focus his eyes, much less walk, talk and sit up by himself. A tube connected to his stomach keeps him fed. His caregiver — usually Mayra — has to use a glorified vacuum to suck the mucus from his nose and throat and pound his back to break up the phlegm and keep him from getting pneumonia. He sleeps hooked up to a monitor that keeps constant track of his heart rate and the amount of oxygen in his blood. He must receive three hours of therapy five days a week and take high doses of vitamins to fight for his life. Rivera takes her son to see almost a dozen different doctors, most of them in San Antonio because the disease has affected every part of the little boy’s body. “ This is all I know,” Rivera said. “You get used to it, but it’s overwhelming because you wonder, ‘When is it all going to end?’” Rivera has relied on her faith to help her son. She takes Rosendo to church almost every Sunday. She prays the same three prayers on cards fellow parishioners gave her. She reads her Bible every day. She has
even held prayer meetings at her
home with friends and
family. SIGNS OF TROUBLE Rosendo started out like many infants. He smiled and looked at whoever talked to him. He laughed and could push himself up when he was lying on his stomach. Rivera said she noticed something was wrong when Rosendo began crossing his eyes. She took him to an eye doctor who prescribed eyeglasses to the child. It didn’t help. No one knew at the time that Rosendo was born with an illness that would rob him of his energy. As near as anyone can tell, a virus he caught when he was 4 months old exacerbated the disorder that changed their lives. “ I never had the same child,” said Rivera, 28. “I remember he used to talk to me, he used to laugh, he used to roll. After that, everything just stopped.” The disease triggered seizures and affected his digestive system. “ Every time I’d feed him he would scream and arch his back,” Rivera said. “Food would come out of his nose.” Rivera said she took her son to numerous doctors throughout the Rio Grande Valley, but no one could determine what was causing the baby’s illness. “ He kept on being sick, sick, sick. He stopped laughing, rolling. … Everything just stopped,” Rivera said. Rosendo’s pediatrician, Roland Dominguez, said he suspected the child had a chronic illness from the time he started treating Rosendo in August 2005. But he couldn’t determine what it was. “ It took a long time to diagnose it,” he said. ANSWERS, FINALLY Rivera said she sometimes wondered if she was just being a panicky first-time mother, but as she watched her son’s health deteriorate, she began pushing for answers. On June 25, 2005, Rivera was in San Antonio for a celebration after the Spurs won the NBA championship when she noticed her son wasn’t feeling well again. She took him to the emergency room for a visit that lasted 40 days. Rosendo’s
lungs were filled with food that his malfunctioning throat
had sent
in the wrong
direction. They took the top part of his stomach, wrapped it around the bottom of his esophagus and stapled the two together to help keep stomach acid from reaching the esophagus. But another seizure last summer broke those staples, so he had to have another surgery. While they had the small boy cut open, doctors took a piece of his liver for a biopsy. Several months later, the results from that biopsy came back: Rosendo had a mitochondrial disease called cytochrome c oxidase deficiency. Rivera said the hospital where her son was being treated had Internet access, so she immediately went online to read up on the disease. “
I think I should’ve gotten into nursing. I’ve
learned so many things,” she
joked. “ Why didn’t anybody catch it? Why weren’t more tests done? I knew there was something wrong. I really blame myself,” she said. 24-HOUR CARE Since then, Rivera has spent time studying all she can about mitochondrial diseases and meeting other parents with children who suffer from them. There is no way to cure mitochondrial disease — they can only treat the symptoms — so Rivera sometimes has to find new doctors who can treat the new symptoms as they pop up. “ I ask a million questions before I decide if I want them treating my son because of what happened to my son,” she said. Ramirez has germ-proofed her home because even the common cold can pose a serious threat to her son’s health. She has visitors wash their hands and carries disinfectant wipes wherever she goes. “ I love my son and I’ll do anything for him. But you (become) a slave to this disease and you can’t do anything,” Rivera said. That includes adjusting to a new way of life. Rivera has a schedule taped to a wall outside Rosendo’s bedroom listing what medicines he needs to take each hour. She painted her son’s room in primary colors and has color patterns attached to the window to help stimulate his vision. His doctors don’t know how well he can see because Rosendo cannot even focus his eyes. “ We know he sees light. We just don’t know how well he can see,” Rivera said. Caring for Rosendo is a 24-hour operation, she said. Rivera had to leave her job as a high school speech teacher to take care of her son. She relies on Medicaid to help pay for his health care. She has a home health nurse, Sonia Garza, to help her with Rosendo’s treatments. Recently, she’s had another nurse come in at night to take care of her son. “ We help each other out a lot,” Garza said. “One of us has to be holding him while (the other) gets the nebulizer or medicine or carrying equipment. He squirms a lot.” Garza
also
travels
with
Rivera
to
doctors
appointments
in
Harlingen
and
San
Antonio. “ We’re driving squashed (in the vehicle),” she said. The three usually leave about 3 or 4 a.m. Rivera said she tries to schedule a few appointments back to back so the trio doesn’t have to travel as often. They usually make the trip about two to three times a month. Rosendo sees more than half a dozen doctors and specialists, including a neurologist, gastroenterologist, geneticist, ophthalmologist and cardiologist. He has to go for a full checkup in San Antonio once every six months to make sure his organs are functioning. He also sees Dominguez, the pediatrician in Harlingen, who works closely with the specialists also treating Rosendo. WORKING FOR A SMILE Rivera
said she’s grateful to the support
system she has: Rosendo’s father,
her family, Garza, her church, as well
as medical staff and therapists
who work with her son. But she
said there are times when she becomes
frustrated and wonders why she has to
endure
all this. “
You wonder what you did wrong. I went
to school, I got a college degree, I worked. I always wanted
to have children, but you never dream of having to go through
this,” she
said. Rosendo’s doctors don’t know what the boy’s life expectancy is, and don’t want to guess, but many children with the disease don’t survive to adolescence, according to information from the Pittsburgh-based United Mitochondrial Disease Foundation. “ I understand what could happen but I don’t accept it,” Rivera said. “As a mother, I have to think he’s going to make it. I try to look on the bright side.” But the immediate future is filled with uncertainty. Rosendo has good days and bad days. And while there is hope for his future, with research in areas such as gene therapy, relatively little is known about the disease today. Rivera,
for
her
part,
said
she’s not angry with
the doctors who couldn’t
diagnose her son. But she
urges them to listen to parents
when they tell them their
children
aren’t
feeling well.
She also would
like to
provide doctors
with information
about the disease. Therapy has been good for him, his therapists said. On a Friday morning at Milestones on McColl Road, Rosendo managed to balance himself while sitting on a blue exercise ball. His physical therapist, Roxana Santaella, held him for extra support. He grabbed at toys and at one point he even pushed himself off the mat while lying on his stomach. “ I’d like to see him roll on his belly or command a crawl,” Santaella said. “He has a lot of movement. |
