Our Kool Kid

Adalyn is shy and reserved until you get to know her. Once you do, you get to know our happy-go-lucky, empathetic, determined, tough, best belly laugh that makes you laugh, little girl! Her dark eyes peering through her glasses, dance in wonder as she takes in the world around her, and as she flashes her sweet, gap-toothed grin, and starts to giggle, you can’t help but wonder what she’s thinking. Most may not know; sometimes, we don’t even know. Believe us, we sure wish we did, especially when it comes to her seizures. If only she could give us some indication that she was going to have one.

Adalyn was diagnosed with Koolen-de Vries Syndrome (KdVS) in November of 2023. She is an official Kool kid! Kool kids are described as, “sociable, friendly, happy and loving” (rarechromo.org). Her diagnosis with this syndrome made all of the little pieces of her puzzle come together: the gap-toothed grin (common feature), glasses (1 in 3 visual impairment), atrial septal defect (1 in 4), hip dysplasia (1 in 5), frequent respiratory infections, apraxia of speech, and seizures ( ~ 50% of all KdVS individuals).

Adalyn is one of the 50%, and with her inability to communicate with us that she is going to have a seizure, we are working with Little Angels Service Dogs, to secure her a seizure alert dog to help be her voice and get her the assistance she needs during a seizure.

We will be taking Pre-Orders until October 6^th at Noon. We will then print all the shirts and we will contact you once they are ready for pick up. You will be contacted after October 23rd

Simply select your items you would like and add to cart. You can create an account, or check out as a guest, and select your method of payment then. Your order will not be placed/completed until we have received payment (or payments have been arranged) We will contact you AFTER OCTOBER 23rd when the orders are ready for pick up! Please contact Amie with any questions: aljackson84@gmail.com. We appreciate your support!