February 1st, 2017
Nathaniel Kirera wasn’t expected to survive birth. When he did, then he wasn’t expected to live to see his first birthday, much less his 14th. He also wasn’t supposed to be able learn, let alone write a book. But he’s done all that, and today his medical odyssey is behind him.
That Nate has achieved so much despite having multicystic hydrocephalus, a condition in which half of his brain and its fluid drainage system formed abnormally, is no surprise to his mother Ann Makena, who, while she was pregnant, dreamed of a son walking and talking.
“The doctor said. ‘I’ve seen very bad conditions, but I’ve never seen anything this bad,’” Ann says. “I said, ‘It’s not that I don’t trust you … but I really felt very confident about this child. I said, ‘No I’m just going to leave it up to God.’”
August 9th, 2016
For 14 years, Brad Lewis never knew quite what to expect when he woke up in the morning. A rare genetic disorder, tuberous sclerosis, caused a variety of health problems. But the one that disrupted his life the most was epilepsy. At one point, Brad was having as many as 80 seizures a day.
“Seizures are so unpredictable. If Brad wasn’t having a seizure, he was worried about having a seizure,” says his mother, Bernadette Lewis. “It affected every minute of his life, whether he was at school, with friends or at home.”
Brad was also dealing with other complications from his medical condition. After trying many medications and going through multiple surgeries, Brad’s parents decided they needed another expert to weigh in on the situation. That brought the family to Nicholas Wetjen, M.D., a physician in the Department of Neurosurgery at Mayo Clinic in Rochester, Minnesota. Read the rest of this entry »