Chapter 48 The Research Study
Damian read Dr. Harris's text three times. "A research study. They want to include our family."
I looked at the screen. "What kind of study?"
"Genetic counseling and advanced testing. They think the GNB2 variant in our children could help other families."
Rose appeared in the doorway. "Help other kids like me?"
Damian knelt to her level. "Maybe. Would you want to do that?"
She thought about it, her gray eyes serious. "If it helps someone not feel dizzy, yes. And if it means fewer needles for them."
I smiled. "That's a good reason."
The next morning, Damian called Dr. Harris. She explained the study in detail. The university research team had been studying GNB2 variants for three years. They had published two papers. They needed more families to understand the full range of symptoms.
"They'll provide free genetic testing and counseling," Dr. Harris said. "In exchange, they'll use your family's data to learn more about how this variant affects children over time."
Damian paced the kitchen, his phone on speaker. "What are the risks?"
"Privacy is strictly protected. No names or identifying details will ever be published. The children will get additional monitoring at no cost to you."
I spoke up. "What about the emotional impact? This is a lot for them to process."
"They'll have a child psychologist on the team. Someone they can talk to about what they're learning and how they're feeling."
Damian looked at me. I nodded slowly.
"Sign us up," he said.
The research team scheduled a virtual intake for the following week. A genetic counselor named Sarah led the call. She was warm, patient, and spoke directly to the children, not just to us.
"Rose, do you know why your body feels different sometimes?"
"Because my nerves don't talk to my blood right."
Sarah smiled. "That's a great way to put it. We want to understand more about that so we can help other kids who feel the same way."
Lily raised her hand. "Will it hurt?"
"Not at all. Just talking and maybe some extra blood draws. But you'll get stickers."
Max frowned. "I don't like blood draws."
Sarah's voice softened. "I know, Max. But your mom told me you have dinosaur stickers. Maybe you can bring one to hold during the draw."
Max nodded. "I have a T-rex."
"Perfect."
The first in-person visit was scheduled for two weeks later. The research center was at the university hospital, a bright building with floor-to-ceiling windows and colorful murals on the walls.
The children were given new IDs, coded numbers instead of names. Rose was R007. Lily was L008. Max was M009. Leo was L010.
Leo looked at his card. "I'm the only one without the gene."
Sarah nodded. "You're our control. That means you help us understand what's normal for kids who don't have the variant."
Leo puffed out his chest. "I'm normal."
"You're very normal. And very helpful."
The testing took three hours. Blood draws, heart monitors, questionnaires, and a physical exam. The children answered questions about their symptoms. Rose described her dizziness as "like standing on a boat in rough water." Lily said her heart "races like I just ran up stairs when I only stood up." Max said his legs "feel wobbly sometimes, like jelly."
Leo had no symptoms. He sat in the corner of the room, drawing dinosaurs on the examination paper.
When the testing was done, Sarah sat with Damian and me in a small conference room.
"The preliminary data suggests that the GNB2 variant is more severe in Rose than in Lily or Max. Her autonomic nervous system is more reactive. We'll need to adjust her medications."
I leaned forward. "What kind of adjustments?"
"A higher dose of fludrocortisone, plus a low-dose beta-blocker to help control her heart rate. We think this combination will make a significant difference in her daily symptoms."
Damian's jaw tightened. "More medicine."
"More targeted medicine. And we'll monitor her closely for side effects."
Rose started the new medication that night. The beta-blocker made her tired at first. She fell asleep on the couch after dinner, her head on a pillow, her book open on her chest. Lily covered her with a blanket. Max placed his dinosaur protector beside her.
Rose woke up the next morning with a clear head. "I don't feel dizzy."
Damian checked her pulse. "Your heart rate is normal. Seventy-two beats per minute."
"I stood up fast from bed and nothing happened. No stars, no wobble."
I hugged her. "That's the medicine working."
She looked at her hands. "So I can run now?"
"Not yet. The doctor wants to wait a few more weeks. But you can walk faster. You can play on the swings."
She smiled. "That's good enough."
The research team called every week for a month. They tracked the children's symptoms, adjusted medications based on the data, and offered counseling sessions. Rose talked about feeling different from her friends at school. Lily talked about being scared of falling during recess. Max talked about his dinosaurs and asked if dinosaurs ever got dizzy.
Leo asked if he could have counseling too, just to be included. Sarah laughed and scheduled a session for him. He talked about being the only normal one in the family.
"Normal is good," Sarah said.
"I know. But sometimes I feel left out when everyone else has appointments and medicine."
Sarah nodded. "That's a very normal feeling. And it's okay to talk about it."
On the last day of the month, Dr. Harris called with a summary.
"The research team is preparing a paper about your family. They want to submit it to a medical journal. It could help doctors around the world understand GNB2 variants better."
Damian's voice was cautious. "With our names?"
"With pseudonyms. No one will know it's you. But your children's data could change how other families are diagnosed and treated."
I looked at Rose. She was reading on the couch, Max's dinosaur in her lap, her legs tucked under her.
"We're proud to help," I said.
That night, we sat on the porch. The stars were bright. The marigolds had bloomed, orange and yellow against the dark soil.
"We did something good," Damian said.
"We did."
"Even with all the hard parts."
I leaned into him. "Especially because of the hard parts. That's what makes it meaningful."
He kissed my forehead. "I love you."
"I love you."
The porch creaked softly. Waffle snored at our feet. Then Damian's phone buzzed with a new message.
He read it. His face went still.
"What is it?" I asked.
He turned the screen toward me. A text from Dr. Harris.
The research team found something unexpected in the genetic data. It involves Leo. Please call me tomorrow.