Kiran has been invited to be one of the highlighted kiddos for the Simpson College Dance Marathon this year that raises money for the Stead Family Children’s Hospital in Iowa City. This is cool, since Kiran’s specialists are all at that hospital. I was asked this week to introduce Kiran, via email, to the execs of this event. Obviously, for something like this, they want bits of his medical story, but that’s never where I start. This isn’t what I wrote in that email, but if I were to introduce Kiran to the world, it would go something like this:
When we chose his name over 24 hours after he entered this world, I had no idea how fitting it would be for him. Kiran means “ray of light”, and this child is absolutely the brightest light I have ever known. His smile is contagious, and you simply cannot spend time with him without feeling just a bit better about – well – everything.
Kiran is a social seven year old; he absolutely LOVES his people. If you’d let him, he would just hug and snuggle with you all day, especially if you were willing to talk or sing directly into his ear while doing so. He enjoys music, Daniel Tiger, and watching football on TV.
Kiran was born with a very rare genetic misspelling on the gene RAB11B. In the research, there are only about three other kids worldwide with this same genetic misspelling, but I have connected with a few other families via social media, so we know there are a few more out there! Kiran is unique in that, in addition to the characteristics associated with this genetic diagnosis (such as intellectual disability, nonverbal, vision issues, motor difficulties), he also has a critical congenital heart defect called Tetralogy of Fallot with Pulmonary Atresia and Major Aortopulmonary Collateral Arteries (MAPCAs). He had an open heart surgery when he was ten and a half months old, and we are actively monitoring his heart for a necessary, planned upcoming procedure. Kiran is a wheelchair and assisted gait trainer user, is learning to use an eye gaze AAC device for communication, uses a g-tube for his nutritional needs, and is just an absolute joy to be around!
Truthfully, as I’ve stated before, Kiran is the absolute love of my life. I am so incredibly lucky to be his mom, and I am thankful that life takes us down paths we never would have imagined asking to be on.