Joel the strong-willed

Joel was born on February 6th, 2019. He came into the world crying, and everything was going perfectly. A few hours after birth, I noticed Joel would hold his breath and scream. He will turn pale and his lips blue. His episodes were very brief at first. Then, the next day, it became more frightening and noticeable that something more serious was happening. He was diagnosed with epilepsy at two days old. He was transferred to a higher-level NICU. Joel spent his first month of life getting tested multiple times a day and passed each with flying colors. He was on antibiotics in case he had a bacterial infection that they couldn’t detect. Joel was a healthy child who had uncontrollable seizures. It wasn’t until a few days before the genetic results we found the medication that stopped his seizures. He was three weeks old when he was diagnosed with KCNQ2.

The doctors told us Joel’s condition causes developmental disabilities, and there were many things Joel may never do. Since leaving the NICU he has done various therapies. He currently does physical, occupational, vision, speech and feeding therapy. Joel is now two years old. He has been seizure-free since he was four months old. He cannot self-feed, speak his needs or wants, has cortical visual impairment, and struggles with fine and physical motor skills. Joel learned how to walk a few months before his second birthday. He doesn’t know how to go up or down the stairs, how to climb or step over things, and he constantly falls. Joel is a happy child. He loves music. He loves to imitate the sounds of songs, and he loves to dance. Joel has the best rhythm and doesn’t miss a beat. All family members love him. He is spoiled rotten with affection and has recently learned how to show us just as much love. He brings us so much joy. I’ve created a blog to show his journey with the world and to spread awareness. I’ve met many families with children with KCNQ2 from all over the world. We’ve become great friends, and I am no longer alone, feeling sad when I can’t explain my feelings to others that don’t understand. It has become more comfortable as Joel has gotten older. Things are better. Even though I wish things were different at times. I wish things were easier for Joel. I know this is the way it needs to be, and I’ve come to terms that I wouldn’t want Joel to be any other way. His diagnosis does not define him. Joel is our inspiration. He has overcome many obstacles, and I know he has a lot more to show the world. Thankfully, because of Joel, our company gives a child with special needs in our community a free bedroom makeover once a month. This is just the beginning of what he’s inspired us to do. There is more we’d like to do for our community in the near future. We love you Joel with all our heart and will do anything and everything we can for others fighting similar battles.