Addison ‘Addi’ Walter is a beam of light to anyone she meets. Addi is full of energy from sun up until her head hits the pillow at night, defying the odds of her diagnosis every single day. In January of 2012, I was writing our first story about Addi. This story, titled “Addi-ventures”, was our way of sharing with family and friends that we were on new adventure, an unexpected journey. At 27 years old and minutes after an especially arduous birth experience, my husband, Robbie, and I were certainly not expecting the words “we think your baby girl may have Down syndrome.”
It was even more shocking news when the genetic test results indicated that Addi had the rarest form of Down syndrome defined as Mosaic. Only 2% of those with Down syndrome have this variation. In Mosaic Down syndrome, some cells have an extra chromosome and some do not. Greenwood Genetics quickly became fascinated with Addi as there are only a handful of people with this specific diagnosis in South Carolina.
Despite having this unique version of Down syndrome, doubts and limits were quickly placed on Addi by many. Healthcare professionals questioned if she’d ever walk, talk, or have any quality of life. I went from moments of shock, anger, and grief into complete Mama bear mode, ready to fight for this baby girl.
Addi started speech, occupational, and physical therapy at 2 months old. At 9 months old Addi enrolled at the Meyer Center for Special Children, a place that will always be near and dear to our hearts. By age 4 we were ready to try typical pre-school, but with a host of therapists working with her daily. Addi has seen nearly every pediatric specialist team in Greenville to monitor possible heath conditions for which she’s at higher risk. The array of early intervention options, community programs and services for those with special needs in the Upstate are incredible and have been a true blessing to our family.
That Mama bear season of our life was so tiring and demanding, but filled with such purpose. The victories and joys outweighed the challenges. During this season I was not only fighting for Addi, but also caring for her baby sister (who surprised us just 22 months after Addi was born). Amelia “Emmie” Walter joined in on the advocacy from day one. They truly share an indescribable bond, even though I’d say that siblings will be siblings regardless of any extra chromosomes! However, I know deep down that Emmie will be an ambassador and protector for her sister, always.
A decade later our Addi-ventures continue. Addi enjoys dancing her heart out at her weekly dance class, participating in church activities, camping and outdoor family adventures, theme parks, writing creative song parodies, telling hilarious jokes, and reading her favorite books (Magic Tree House and Harry Potter). She’s hiked to the peak of Table Rock and her picture has been displayed on Times Square for the NYC Buddy Walk. She self-advocates as she tells classmates or new friends at the playground that she has Down syndrome, describing what it’s like to them. She continues to show the world that she’s more alike than different. Addi also just joined the girl’s BSA Scout troop that meets at our church – blazing yet another trail.
Addi absolutely loves school and is thriving in a typical 3rd grade classroom. We are so incredibly thankful that Addi is in a school that embraces inclusive education where she continues to be surrounded by amazing therapists, teachers and a supportive special education team who believe in her and see her true potential.
Regardless of everything that Addi has overcome and achieved, what truly stands out, above all, is her loving and cheerful spirit. Every day is the best day ever. Every new activity or experience is met with pure excitement and joy. Every new person we encounter is met with a smile, a greeting, and a compliment. I don’t know about you, but these are the things that change the world and can leave an impact on someone’s life! Addi is the quintessential example of how to live your best life.