Kaeli

Kaeli, a Kabuki Syndrome Warrior

I remember April 8th of 2020 like it was yesterday. I was sitting at the kitchen counter when my phone rang. A number I know by heart- the OCY Foster Placement Coordinator. I answered, and we were asked to take the foster placement of a newborn who was currently being fed by a tube in her nose, only had 1 kidney and a handful of other "small" concerns. I called my husband, fully expecting him to say, "We can't take on a placement like that; we have no medical experience." I rambled off everything I knew, and he said, "Let's do it. You're laid off, and our home is empty- there's no better time." The next day, we drove to CHOP to meet Baby Girl BR and take our training. I spent the next 6 months bedside in the hospital while Baby Girl received more and more diagnoses. Now, 4 years later, Baby Girl BR is adopted, and now our daughter, Kaeli Reis. Kaeli has a rare genetic mutation called Kabuki Syndrome. KS is described as affecting multiple systems in the body, and for Kaeli- it literally affects her from head to toe.

Kaeli will soon undergo eye surgery, had a cleft palate repair, had a congenital heart defect repaired at birth, is strictly tube fed, and only has 1 kidney; she has thick odd-shaped toenails and more and more. Not a single one of those diagnoses is going to slow this girl down. She is the light of our lives. She LIVES for music- will become mesmerized when a song comes on the TV. You will often catch her stomping around the house, roaring like a dinosaur, or hopping around and saying, "Ribbit." She has been jumping on her trampoline since she could stand on her own. She LOVES swimming and the playground. Kaeli is an absolute joy whose smile and laugh will captivate the entire room; when she walks in, you can just feel her positive presence. We were so fortunate to be given the opportunity to be the parents of such a wildly loving, spicy, and fun little girl, and don't take a single second of this journey for granted.