My son Mirai was born with a rare type of epilepsy called Dravet syndrome, also known as Severe Myoclonic Epilepsy of Infancy (SMEI). This is a rare and catastrophic form of intractable epilepsy that begins in infancy. Individuals with SMEI suffer from intellectual disabilities as well as severe behavioral and development delays.
Mirai, who is now almost five years old, has had countless amounts of seizures and has been hospitalized over 30 times in his short life. Just after his first birthday, he experienced a severe seizure which led to brain damage and development delays. After numerous physical and speech therapies, he began to talk, walk, swim, and enjoy many of the activities you would expect a normal four-year-old to enjoy. Unfortunately on May 26th this year, after being seizure-free for 10 months, he had another seizure and developed encephalopathy with organ failure. He was on life support for 3 weeks before he was able to breathe on his own. But this time, Mirai’s heartbreaking story took a turn for the worse. He suffered severe brain damage, leading to blindness and a loss in mobility in all his limbs. He has since been diagnosed with a condition known as spastic quadriplegia. Additionally, he developed severe eating/swallowing conditions, leading to an operation for a G-tube and NISSEN surgery in his abdomen to enable feeding.
Mirai successfully had his operation this past weekend and is in recovery. I pray daily not only for my son, but also for all the families who are dealing with epilepsy. I hope that we will find a cure one day, but in the mean time, we have to help the general public understand epilepsy. Many people think it is not a serious medical issue, because they do not understand it.
Right now I feel so alone, because the doctors have told me Mirai’s case is rare—so all I can do is try and raise awareness. If my son could end up in this condition, it could also happen to somebody else. So, I am sharing Mirai’s story here, and I have also created a Facebook page to share his story and get support and encouragement. If you are on Facebook please, take a moment to follow Mirai on his journey to recovery. We have a long road ahead of us, and words of encouragement mean the world to Mirai and me.