A DAUGHTER
Written by: Leena Panwala, an INAD caregiver
This is the story of Ariya Panwala, currently residing in NJ, who came into this world as a happy, healthy, beautiful little girl on July 24, 2014.
She made all our joys of parenthood and family come true. We clapped when she sat up on her own and cheered when she crawled. Ariya smiled with peek-a-boos and laughed loudly. We imagined her taking her first steps, then walking….
But, somewhere around 13 months, the laughs slowed, 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.
Due to an extremely rare disease, her nerves had lost their strength and function. Ariya was diagnosed with Infantile Neuroaxonal Dystrophy on September 16, 2016, just after she turned 2 years old. These 3 words changed the core of our existence. The feeling of helplessness when we were handed her diagnosis was unlike anything we had ever experienced. We could no longer feel the ground beneath us.
INAD is a disorder of the central and peripheral nervous system. It starts to present in very young children between the ages of 6 months and 3 years of age. INAD falls under the umbrella of PLAN (phospholipase associated neurodegeneration), along with Juvenile Neuroaxonal Dystrophy and Dystonia Parkinsonism, all of which are caused by mutations on the PLA2G6 gene.
INAD allows parents to experience all the joys and excitement that comes with having a typical child, but in the blink of an eye, robs parents of those joys. The excitement is replaced with feeling helpless and constant fear – fear of not knowing how to help a child that is immobile and nonverbal with vision and hearing loss. Children afflicted with INAD are completely dependent on their caregiver for all of their daily needs.
The INADcure Foundation was inspired by Ariya and her friends in 2017 with the purpose and passion to spread awareness and aggressively work together with the scientific community to effectively treat and one day eradicate INAD/other forms of PLA2G6-related disorders and to be the voice these children didn’t have.
