When Kole was just six months old, he began having a rare type of seizure called infantile spasms. He was put on a harsh steroid treatment called ACTH to control the seizures and has been seizure free for over a year. Doctors began genetic testing to determine the cause and the initial tests came back abnormal. It wasn’t until he was 14 months old that they diagnosed him with a rare genetic condition called Dup15q syndrome, in which a small part of his 15th chromosome has been duplicated. Though Kole has global delays and hypotonia, his incredible spirit and ongoing therapy has allowed him to make incredible gains already.
Kole has taught his parents to notice and appreciate the little things in life and to live in the moment. “Your dreams do change once you learn that your child has special needs. You realize that the things you thought were important aren’t. Happiness is the most important thing.” As with many other children with rare conditions, little is known about what the future holds for this Tiny Light. He has a wonderful team of therapists and doctors that are all working together to help him be the best he can be. Kole’s mother encourages others facing similar journeys to “take help from others when you can, be kind to yourself, and know that you are your child’s advocate and you will find the strength even at the darkest hour to do what you need to do to help him/her be their very best.”
Story by Emily Harrison