Opiyo Ivan's Story
Opiyo Ivan was three years old when he contracted temporal lobe epilepsy. At five, he fell into a fire and sustained 3rd & 4th degree burns over 35% of his body. I met him in 2006 and was able to get him admitted at Shriner's Hospital in Boston. He stayed with me in the US for 5 years. We returned to Uganda in 2011 where he was reunited with his family. In May of 2016, I had begun a GoFundMe site to raise money for additional surgery that he desperately needed. Tragically, he died unexpectedly on June 14, 2016 after suffering a seizure.
In honor of Opiyo and in recognition of his love for children and his compassion for the suffering of others, we are going forward with our plans to create Africa Focus on Epilepsy and Nodding Disease Syndrome (AFENDS) to provide psychosocial services for children suffering from epilepsy or nodding disease in Africa. To support AFENDS in honor of Opiyo, please click below to donate.
Opiyo was loved by many, in many countries. If, as Ernie Banks suggested, "the measure of a man is in the lives he's touched," Opiyo was a large man indeed, with a great heart. I believe he would want to be remembered in this way.
- Partner with community health workers & local organizations
- Collect data and assess the needs of the community
- Early detection for timely investigation and treatment
- Establish Village Information System to assist health planners
Nodding disease is a neurological disorder characterized by head nodding and seizures. Though the cause is yet unknown, suspected cases receive supportive treatment including anti-convulsant medications such as carbomazepine, phenytoin, folic acid and phenobarbitone.