artha Poulat is a grateful mother. Her 9 year old son, Andres, is a happy boy today who enjoys the simplest of pleasures like walking and eating. Two years ago, Andres was suffering and Poulat and her family had to make a heart-wrenching medical decision that could have had a much different ending.
When Andres was born, everything seemed normal. And Poulat knew “normal.” Andres was her fourth child, and for the first seven months of his life, “everything was perfect,” recalls Poulat. “He slept nice and he was a pretty easy baby.”
When he was about 7 months old, the incessant crying started, and so did the seizures. Something was terribly wrong.
“We went to the neurologist, who realized that he had had a stroke that affected all of his left brain,” she said. “The left side was completely dead.”
Andres was being treated in Boston when doctors told her, “We cannot promise you that he will ever walk or talk. Your only hope is therapy.” Andres began with five hours of therapy every day, said Poulat.
At first, it was hard to see any changes. He was still under a year old at the time. What was normal development for normal child, Andres had to be taught, including how to chew and swallow. Progress came about slowly only to be undone with seizure activity.
“What he would gain in therapy, he would lose in a seizure,” said Poulis.
By the time Andres was 3 years old, he was diagnosed with a disease called ESES – electrical status epilepticus during sleep.
“We realized that he was having seizures 97 percent of the time at night,” said Poulat. “We worked so hard during the day with the therapy, but at night, when your brain processes, he couldn’t do it because of the brain activity.”
It’s like a bottomless pitcher of water, she explained. You put water in, but it just keeps going out.
Therapy helped a great deal, recalls Poulat.
“At two years, 10 months, he walked,” she said. “The doctors said to walk was a big, big achievement.”
After he walked, he crawled. Then Andres started talking, saying little words. By the time he was 4, he was able to control his bathroom habits, but soon after, because of the seizures, the steps backward were becoming more evident.
“It was frustrating for him,” she said. “All the little gains he made, he lost.”
Eventually, after all treatments to control the seizures failed, the family was offered an extreme alternative, one they initially rejected immediately as being too radical.
The last option for Andres was a hemispherectomy, a very rare surgical procedure where one cerebral hemisphere is disabled.
“The problem was the bad side of the brain was sending signals to the good side,” said Poulat. “It was a super-hard decision to make to disconnect the bad side.”
Obviously, the risk of death during surgery was a big factor in their decision. Another was that the disconnect would fail and Andres would be left with nothing and no way to gain it back.
“When they first proposed the surgery, we said we would never do it,” said Poulat.
But when Andres was 7, and after seeing her son suffer and all other treatments fail, she and her husband Genaro decided to go through with it.
“It was the hardest, scariest time of my life,” recalls Poulat.
The surgery that was supposed to last five hours lasted 10. Andres had lost a lot of blood. He didn’t wake up for three days.
“But then he recognized us when he woke up,” she said. “And back in therapy, he had to again learn to walk and speak all over again.”
Today, Andres is walking and talking, goes to school and is, according to his mother, a very happy boy.
“Everybody loves him. He is super-social,” said Poulat. “You wouldn’t believe he doesn’t have half of his brain.”
Andres still goes to therapy and is making remarkable progress, said his mother.
“Andres is my angel,” she said. “My life wouldn’t be the same without him.”
The rest of her family feels the same way.
Genaro and Martha have three other children: Genaro, 17, Daniela, 15, and Bernardo, 13. “We are all super blessed by Andres.”
Recently, someone asked Poulat: If God gave you a chance to do to it again, what would you do? Poulat was able to answer honestly, “I would want it exactly the same way. There is nothing I would change.” Because of Andres, Poulat felt compelled to give back to the community.
During her hours and hours of sitting in waiting rooms chatting with other moms whose children were also in therapy, Poulat made a startling discovery. She learned even the best health insurances allow for only a certain number of therapies a year, somewhere around 60. “That happened to me, too,” she said. “But I was lucky. I was able to continue on with my son, but some of the rest of the kids couldn’t.”
She and Maida Berberian-Bignon started the nonprofit Act4Me five years ago.
“When we started Act4 me, we wanted to give these kids the continuity of therapy,” said Poulat. The organization gives grants to children so they can have one year of therapy.
“What I know is that you cannot stop therapy,” she said.
For some kids, it’s physical, speech, occupational, learning to talk and swallow.
“In the beginning, we said, if we can help a kid, we will be super happy.”
Andres does not benefit from Act4Me, and nobody in the organization gets a salary.
“I want the people who help us to feel comfortable,” said Poulat.
But not all kids get the therapy they need because of cost constraints. That’s where Act4Me steps in.
“We want to give them a chance to strengthen their abilities,” she said.
Sponsors get to meet the children who they are helping. Often, when you donate to a charity, you don’t really know where the money goes, but with Act4Me, it’s easy to follow donation dollars. “And parents of the children get a chance to thank someone who is changing their life,” she said.
Currently, Act4Me serves 50 kids in Miami-Dade County. When the organization was started, organizers agreed grants would be one-time-only for one year.
“Now we are finding that kids need to reapply,” said Poulat. “But the thing is we need more resources so we can help new kids and re-applicants. We would help more kids if we could, and maybe this year we will. We know from the bottom of our hearts that people want to help. Without therapy, these kids don’t have a chance.”