Strong support
People worldwide mail cards to boy undergoing brain surgery
On Oct. 21, Meaghan Luther posted on Facebook, asking friends to mail cards to her 5-yearold son, Adam, who would soon undergo brain surgery.
Within two weeks, Adam had received hundreds of cards and packages from friends, family and complete strangers, in town and as far away as France, South America and Australia.
“I never thought it was going to be this big,” Luther said. “It got shared more times than I can think. It just bloomed.”
Luther said that just before Adam’s second birthday, he started having seizures, and though she and her husband, Alex, brought him to the best doctors at Boston Children’s Hospital, none could determine what was causing them. The family tried 15 different medications, all with various side effects, but nothing seemed to help.
By 2021, Adam was having hundreds of seizures every day. In May, he had his most significant seizure cluster yet, and began losing consciousness and feeling weakness on the right side of his body.
Worried that he was having a stroke, his parents rushed him to the emergency department at Tufts Medical Center, where they met their new doctor, John Gaitanis, chief of pediatric neurology, who said that they would stop prescribing new medications just to see what might work.
“All the right pieces fell into place without us even realizing it,” Luther said.
An MRI scan came back with nothing abnormal, until neuroradiologist Neel Madan spent more than two hours studying it later that week and found what he believed to be the problem: a tiny area on the left side of Adam’s brain that appeared to be causing the seizures.
Without being sure, however, the Luthers were unwilling to greenlight an invasive brain surgery. Over the next few months, they watched Adam’s condition get worse, as he struggled to sleep through the night due to seizures and had trouble with basic functioning.
“I was watching this little boy become almost paralyzed on the right side,” Luther said. “He could no longer hold a pencil. He forgot about the arm, and any time he washed his hands I would have to tell him to wash the right one. His leg would give out and he’d fall.”
Meanwhile, Luther was doing her best to find alternative treatments, attempting to enroll Adam in research studies that might help him. Without any luck, though, in September, they got in contact with neurosurgeon James Kryzanksi, who specializes in epilepsy, and immediately agreed with Madan’s earlier analysis of the abnormality in Adam’s brain.
They scheduled surgery for Oct. 25, but as soon as she made the appointment, Luther realized there was a problem: it was much too close to Halloween, Adam’s favorite day of the year.
“He’s been waiting for Halloween since Nov. 1, 2020,” she said. “I can’t do that to him.”
But with no other appointments before January, they had no choice. After a final, last-minute MRI confirmed the location of the problem area, they prepared for surgery.
In the week leading up to Oct. 25, Luther brought Adam for a haircut, having a spooky spider web shaved into his hair. On the day of the surgery, the operating room staff left a toy spider on the pillow where Adam would lay, with a note that said he had a friend waiting for him.
The surgeons removed a tiny piece of Adam’s brain, and within 24 hours, he was sitting up in bed, playing on his tablet and using his right hand. Within 72 hours, the doctors said he was ready to go home to his parents and 2-year-old brother, Kyle.
“We have not had a quiet EEG in three years,” Luther said. “This kid has been having hundreds of seizures every day for three years. They took out this piece of brain the size of a cranberry and ended it all. It’s unbelievable.”
When they got home, there were more than 50 packages waiting for them, thanks to Luther’s Facebook post the week before. The post had been shared to local groups and far beyond, inspiring complete strangers to send Halloween candy and cards.
“Every day that we were home that week after surgery, the Amazon driver was coming to the house four times a day, dropping off packages from complete strangers,” Luther said. “They happened to see on Facebook from a friend of a friend and were touched by Adam’s story, and said, ‘ This little boy deserves something.’”
As Adam heals, the cards continue to come in. Luther said that some of her favorite packages came from school classrooms locally and around the country, where teachers inspired by Adam’s story had their students make handmade cards for him.
Another touching piece of the experience, however, was hearing from parents like her, inspired by Adam’s experience to keep fighting for their own children’s health and survival.
“It’s nice to be able to give back a little bit and talk to other parents,” she said. “They can know that they’re not alone, and there is hope that it isn’t always going to be like this.”