A devoted mother sleeps every night with her 19-year-old daughter, who has cerebral palsy.
When she has a convulsion in the middle of the night, the mother uses her fingers to push her tongue down so that her daughter can breathe.
Dania Severino, 52, said her daughter Iris Felix is “like a 6-month-old baby” who weighs about 80 pounds. She has to bathe her, change her diaper, and feed her every day. Communication can be complicated. Iris can’t talk, so when she gets angry she screams, pulls her hair or bites her own hand.
Severino said something magical happens to her daughter when she plays a Zumba Fitness video on television –– especially when the Colombian choreographer Alberto “Beto’’ Perez is in it.
“She recognizes all of the dancers. She likes ‘salsa’ and ‘merengue.’ It must be her Dominican and Puerto Rican blood. She gets up, jumps and moves around,” Severino said in Spanish. “She likes to dance. She moves with difficulty, but she moves.”
Iris’s muscles and tendons are very tight. She can walk but not for very long, and when she does, she does so awkwardly –– and it can be painful. Her legs make a short zig-zag motion, her knees touch each other and her arms are tucked in. Severino uses a very old foldable stroller to take Iris to the hospital or the supermarket.
A few days after Iris was born, doctors diagnosed her with microcephaly, a disorder where the face grows, while the head does not. The condition is rare. According to the American Academy of Neurology (AAN) only one in every 6,200 to 8,500 live births is diagnosed. She was also diagnosed with cerebral palsy due to low levels of oxygen, which damaged her brain function.
“It was the worst day of my life,” Severino said. “I was told that she was going to be like a vegetable that she was not going to be normal and be like other children. I was told that she was never going to be able to walk.”
Severino said she saw the light of hope in “her special child’’ during a beautiful night near the beach in San Juan, Puerto Rico. They were at a concert for the Fiestas Patronales, and she took Iris out of a stroller to take some family pictures. She surprised everyone when she began to walk.
“She was wearing some new black Fila sneakers. We were so happy. It was pure joy. We felt victorious,” Severino said. “I have done everything in my power since to make sure that she gets therapy and that we don’t limit her.”
For years, Iris has been undergoing hours of training at home. In 1995, Severino moved to Miami after she divorced Iris’s dad. Iris has made some progress with the help of occupational, physical, behavioral and speech therapists.
“There were times when I had to ride like three public buses to get to Miami Children’s Hospital,” Severino said. “Therapists began to come to the house in 2006, because she can get loud and lack focus.”
Due to involuntary movements back and forth, Iris needs to have a special Convaid Stroller, which has special attachments and cushioning that Medicaid doesn’t cover. It also increases her mobility for long distances. It costs about $3,400.
“The one she has is really old and damaged. She needs a new one desperately,” said her behavioral therapist Maria Correa. “I see her from Monday through Saturday. She needs to be seating and the stroller helps her focus so that I can teach her how to eat on her own. It’s important. I hope some one finds it in their heart to give her a hand.”