Esta niña tiene convulsiones que amenazan su vida. Su único apoyo son su mamá y sus dos hermanas pequeñas.
From the moment 11-year-old Angelina Serna passes out, her mother and two little sisters have three minutes to save her life.
It happens a lot.
When Angelina’s grand mal seizures strike — sometimes while she’s on her feet, and she falls to the ground in a heap — the clock begins. She wears a pink helmet all the time because they never know when one or two or three might strike in a given day.
Either Sydney, 10, or Lyndsay, 8, will look at the clock and call out the time. One of them rushes to get Angelina’s portable oxygen tank. Her mother, Lorena Cordon, holds her twitching body for one minute. Two. If she hasn’t stopped by three, she must give her an injection. If it’s still going by four, she calls 911.
“Just one minute of watching her go through a seizure feels like an eternity,” Cordon said.
This is what life looks like in the most frightening moments for Angelina and her family.
It’s easy to forget when you watch Angelina laugh.
She is at physical therapy one midweek afternoon, and she’s smiling and jumping rope to improve her dexterity at a Kendall clinic where cartoon bears and walls painted to look like something out of Camp Granada make for a happy alcove.
Here, physical and occupational therapists help Angelina battle Dravet epileptic syndrome, which causes weakness in her joints, loss of balance and decreased coordination.
For the seizures, there is no known cure. What Angelina does have is the support of her tribe: her mother and little sisters who jump rope alongside her.
As she stands next to her daughter, Lorena holds her Angelina by the arm out of habit. A seizure could come at any moment.
“She has them here. She has them at home. She has them in the car,” said Angelina’s physical therapist, Brenda Koonce. “And as she gets older, they’ll probably become more frequent.”
All of Angelina’s doctors have come to know her and her sisters well. On this day, while Angelina is lying across an inflatable ball as part of therapy, Sydney plays on the computer and eats Halloween peanut butter cups as Lyndsay downs a piece of cake someone brought into the office.
“They’re so little and they have to deal with something so painful,” Cordon said. “It only makes it harder having to watch them.”
Angelina was 5 months old when she first broke into a fever. The baby was restless and crying (“She was completely inconsolable,” Cordon remembers) and Cordon rushed her to the hospital.
Doctors realized Angelina was having seizures. It took more than two years to fully diagnose her. She takes at least four different medications twice a day.
“For the next three years, we basically lived at the hospital,” Cordon said.
The hospital is still their reluctant home away from home. Angelina was at Miami Children’s Hospital every week during October. She spent the month’s last four days in the hospital receiving intensive treatment for seizures, through Halloween. The staff dressed Angelina as a ladybug.
Lorena’s role is immeasurable. It was two months after her youngest was born that the girls’ father returned to Colombia and died there unexpectedly. They had met here, in the States, when Lorena had come to visit her aunt.
But her aunt has died, too. And her only remaining relative, her mother, is elderly and lives in the countryside in Guatemala. She cannot bring her here, and the girls, all American-born, know no other country.
“I don’t have anyone to help,” Lorena said. “I’m the mom. I’m the dad. I’m everything.”
The home Lorena and her girls rent is being sold. They are far down the list for government-assisted housing and are in dire need. Not to mention the dilapidated, fuel-guzzling SUV Lorena uses to shuttle the girls from school (Angelina is mainstreamed in the sixth grade) to doctors’ appointments often breaks down.
What the family needs is a steady place for Lorena to raise her daughters and a larger minivan to accommodate her girls and Angelina’s wheelchair and oxygen tank. Lorena studied to be a medical assistant but can only commit to odd jobs because she is Angelina’s only caregiver.
To watch the girls play with their sister, jumping rope together with such casual joy, belies the struggle the family faces every day. It’s easy to forget when Angelina runs up to you and gives you a high five and a smile.
“No matter what she’s going through,” Cordon said, “you’re always going to see a smile on her face.”
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