8 Years Old | Fairfield, NJ
Ariya came into this world a happy, healthy, beautiful little girl and made all our joys of parenthood come true. We clapped when she smiled and sat up on her own and cheered her on when she crawled. We imagined her taking her first steps, then walking. But, somewhere around 13 months of age, she started stumbling instead of crawling. She lost her smile and as a parent, you instantly lose yours too. Her muscles were weakening quickly, her spirit dimmed and our lives changed forever. We never got to see little Ariya take her first steps, instead, we spent the next year of her life going from one specialist to another to find answers. In September 2016, at the young age of 2 we were told Ariya has INAD and that she will continue to regress with a shortened life expectancy.
Many of Ariya’s abilities like sitting, crawling, eating by herself and playing with her toys have been taken away from her. She is now completely dependent on us for all of her daily needs.
With INAD being so rare we were told that it wasn’t on anyone’s radar. Heartbroken, shattered and feeling helpless, we knew we needed to help Ariya not only battle INAD but hopefully defeat it. Ariya inspired us to create the INADcure Foundation, to bring our families together in an effort to spread awareness as far as possible so that INAD will be on everyone’s radar and so we can work together to change the course of this devastating disorder, not just for Ariya but for all kids affected.
Swimming, listening to gossip, having someone read books to her, being hugged and cuddled.
Aside from watching her little sister run around in circles, she listens in and likes to look at any princess shows her sister is watching.
Dear Girl, I wish you more
Be the change you wish to see in the world.
Take each day as it comes.
Don’t lose hope!
Ariya’s diagnosis changed the core of our existence. We had to face the harsh reality that our little girl would not only lose all of her abilities but that she might not make it past her 10th birthday. It turned our lives upside down but it made us fierce advocates for her and passionate for this new purpose in our lives. She pushed us out of our comfort zone and into a world of science, scientists and rare disease advocacy. We have been working tirelessly to collaborate with the researchers in the field to not only advance our understanding of INAD but to push the research towards an effective treatment and eventual cure.
Ariya shares us with her wild and spunky younger sister, Alaya, who keeps Ariya entertained and everyone else on their toes!
As we watch Ariya and the rest of the kiddos bravely battle INAD, we are in awe of their strength and their courage, these incredible children inspire us to continue being the voice they don’t have and fight on their behalf.