Man loses son to rare epileptic seizure

ONE HELPING of agony, Mekete Gebrehanna saw coming. The second portion, he wasn’t prepared for. Gebrehanna left his home in Ethiopia to earn a degree in environmental science in Guyana. Afterward, his wife and two sons joined him for their new life in Truro, where he began studying for a master’s degree at the Nova Scotia Agricultural College in Bible Hill. They loved living in Canada. "The people here are so kind, they humble me," Gebrehanna said, reflecting on the generosity his new neighbours showed his family. His family together, his education almost complete, Gebrehanna was happy. But a few months of bliss came to an end with a visit to the doctor, when his wife Senait was diagnosed with breast cancer. Two years ago, at the age of 44 and three years after arriving in Canada, she died. Shattered, Gebrehanna devoted himself to his sons Fikreab, then 10, and Redeat, 17, who had suffered from epilepsy since he was a toddler. "The maximum that he would get a seizure in a year would be four or five," Gebrehanna said of his oldest. "It was controlled by only one kind of medicine, called phenobarbital. When he came here, he continued to have seizures, and more often. I took him to the doctor and he got referred to quite a few specialists, he even got an MRI and EEG. They say the temporal lobe has a lesion, that’s what they expect causes a seizure. "Eventually, on one day he had nine seizures, in a day, and that was so alarming. He was delusional. Also, some of the medicine . . . had to be corrected, he was off balance some times. He was getting good attention, as far as medical attention was concerned." Gebrehanna had completed all the classes for his master’s, and the bulk of the work on his thesis. But he spent the days after Senait’s death working in the woods, unable to concentrate on his studies. He feared that if Redeat’s seizures worsened, his son’s mental capacity could be affected. "But one day I was working in the woods, and when I come out, they told me he had a seizure at school," Gebrehanna said. "I went straight to the hospital, they put him in emergency. That very day, they say he is OK to go home. They usually do that, because when the seizure is over, they send you back. I bring him home, we have dinner together, and he was complaining ‘How long am I going to stay with this kind of disease? Why can’t they figure it out?’ " In keeping with the culture of their homeland, father and sons were sleeping on the floor as part of the grieving process. To help his younger boy go to sleep, Gebrehanna would lie with him every night, rubbing his back and caressing his head. But after Redeat suffered the seizure at school, he claimed the spot next to his father that night. It had been 19 days since Senait died. "Next morning I want to wake him up. He’s not there. Long gone," Gebrehanna said, tears streaming down his cheeks. "When I touch him, it was so stiff, I thought he had a seizure and I flip him over right away. His face was covered with blood, and the pillow was covered with blood. I know how to give CPR, and I try to give him mouth-to-mouth. After I remove my mouth, the foam gets into my mouth, the bloody foam gets into my mouth. "In the meantime, I call the neighbours, also call 911. I knew he was gone. He was 19. I knew my wife was going to die, but I could never have imagined I could lose my son, too." More than 10,000 people in Nova Scotia suffer from epilepsy, but SUDEP (Sudden Unexplained Death in Epilepsy Patients) is rare. "People don’t generally die from epilepsy," said Iris Elliot of the Epilepsy Association of Nova Scotia. "Even the medical fraternity don’t know exactly what causes it. We know what makes the seizures happen, the electricity in the brain goes haywire, but as to why that happens to some people and not others, who knows?" Elliot has come to know Gebrehanna and admire his resilience. "He’s a man with a lot of faith," she said. "Also, he’s got the younger son to think about, and he has to keep going because of him." Unable to cope with going back to the agricultural college, Gebrehanna moved to the outskirts of Halifax, where he hopes to become a taxi driver so he can support Fikreab, now 12, and be home to greet him when he arrives from school. "He’s a great little kid," the father said. "Had it not been for him, I don’t know if . . ." Many people in Gebrehanna’s circumstances wouldn’t be thinking of others, but he began to ponder how he could help make sure other families do not suffer as his has. So, to raise funds to support epileptic people and their families and to raise awareness of SUDEP, Gebrehanna will host For Redeat . . ., an Ethiopian buffet and cultural showcase, in Halifax on Nov. 8. "I have been humbled by the Canadians, and not only me, there are many Ethiopians humbled by Canadians, make Canada their home," Gebrehanna said. "I ask them if they can help me if I plan such a thing. "There are 35 people preparing food for the event, there will be 17 different types of food and a silent auction of many items, all handmade from Ethiopia." And, Gebrehanna vows, he will finish his master’s degree. "I don’t have any excuse, I want to finish my school," he said. "It’s just — I can’t concentrate. I can read and read any other thing, but not my school. My wife, she would love to see me finish my school. "My happiness was my family. I love my family. My happiest place in my life was my family."