Rick and I have two amazing daughters, Grace and Abby. Abby was born 3 years ago with Dandy-Walker Syndrome. A problem was discovered with Abby’s brain during a sonogram. The wind was knocked out of us. Words came in and out of clarity as the doctors spoke–missing brain, various options, wait and see prognosis.
Steadfast in our faith to grow and love our little baby, we persevered and cherished every kick throughout pregnancy. Ecstasy to our souls when we heard Abby’s first cries on her birth day!
Abby was born full term and confirmed Dandy-Walker Syndrome, occipital encephalocele, two mild heart defects and cleft palate needing a very short NICU stay. She developed hydrocephalus requiring a VP shunt within 3 weeks of birth. Abby has been in and out of the hospital on numerous occasions, has endured brain related surgeries, cleft palate repair surgery, has Klippel-Feil Syndrome, battled ear, GI, and other issues, yet she is making remarkable progress!
She has a myriad of incredible doctors and therapists. They are cautiously optimistic about her future. She keeps on amazing them! Recently her wonderful neurosurgeon said about Abby, “The sky is the limit. She is going to go on and develop into a beautiful young lady.”
Fast forward through a whirlwind of her first 3 years in our glorious world and major surgeries conquered, Abby is a smiling, happy, boisterous child. What’s important is Abby does have a wonderful quality of life. She may have to work a bit harder to accomplish some things than most, but she’s a happy, well-adjusted preschooler. She is a light in so many lives. Abby and her family’s love for each other is inspiring. Abby has a ball being outside running and dancing, loves eating avocado, her favorite song is singing Happy Birthday, and she belly laughs playing peek-a-boo with her big sister. She has opened up so many people’s eyes, including those in the medical field because she is doing so well!
She is a warrior princess who is taking this world by storm! I’m sure someday she’ll thank us for rallying together and fighting for her life. She is surely a life worth saving!
Leigh Isakson is Abby’s mom and the Events Chair for Dandy-Walker Texas. She is dedicated to raising awareness, fundraising for the DWA and supporting families affected by Dandy-Walker Syndrome.