We adopted our sweet Adaya from Ethiopia at the age of three. In this culture it is believed that if a child is born with an abnormality, someone must have committed a sin. Adaya was born with an abnormal shaped head and was born into a culture where people believe if a child is born with anything abnormal, someone must have committed a sin. As a result, her mother kept Adaya in a dark room from birth until she was abandoned in an orphanage at the age of two. But when we first laid eyes on her, all we saw was Adaya’s huge smile and sparkle in her eyes. She had a vibrant twinkle in her eyes that just grabbed our heart when we received her referral. There was no doubt in our minds that — YES – she was OUR girl.
Three years after bringing her home, Adaya had an event that changed all our lives forever! Completely unexpectedly, she had a cardiac arrest, was in a coma, on a ventilator, and spent three months in the hospital. To our utter disbelief, our daughter went from being a vibrant, typical six-year-old to an infant state. We later learned that Adaya had a genetic condition called a, “RYR1 mutation.” Furthermore, due to her genetic condition, during her hospitalization stay, Adaya also suffered a traumatic brain injury.
From this experience I have learned that when one of your children goes through a life-changing event – everything stops! Nothing else matters besides that moment. You leave your home, your jobs and take your family with you to be by your child’s side at every moment. Life can truly change in a moment. It has taught us that faith will carry you through your worst storm; that family is truly everything and to never take a moment for granted.
You then learn to fight and advocate at all costs for your child. You want the absolute best for their life whatever that new normal ends up looking like. Make something positive out of it – try to be the best example of your faith and trust in Christ. Our Adaya is a modern day miracle! Her life has and will continue to impact this world!
Adaya is non-ambulatory, wheelchair dependent, and needs assistance with all activities of daily living. However, her heart’s desire is to be as independent as possible. Adaya is currently in the process of learning everything all over again. Her prognosis is unable to be determined – only time will tell. But what we can tell you is, this amazing girl works hard and is one tough little girl! Her determination and spirit is something this momma admires. We are continually grateful that she continues to progress. However, there is much more to still come.
Adaya is a fashionista! Her favorite playtime has always been dress up. She never goes anywhere without her purse, hairpiece, cute outfit, shoes and earrings to bring it all together. She carries a smile that never ends and is infectious to anyone who places eyes on her. Runway of Dreams has opened a door for our strong willed daughter. Offering clothing that is adaptive to those with a disability allows her to have independence with fashion! And now she has the opportunity to be part of a NYC fashion show with Runway of Dreams!
Adaya is a determined girl and the most amazing part of her story is that despite her life’s beginning and constantly being judged by her looks, she is the most beautiful girl on the Runway and off– bringing a smile to everyone who sees her. This is the most amazing blessing to our family. This is what love does to a life! A true once in a lifetime opportunity – thank you Runway of Dreams!