The Rare Ivory Kay

“…….You knit [Ivory] together in [her] mother’s womb…..[She] will give thanks and praise to You, for [Ivory is] fearfully and wonderfully made; Wonderful are Your works, And [Her] soul [will] know it very well. [Ivory’s] frame was not hidden from You, When [she] was being formed in secret, And intricately and skillfully formed [as if embroidered with many colors] in the depths of the earth.

Psalms‬ ‭139:13‬-15, AMP

Ivory’s Journey

My sweet baby girl Ivory is a vibrant beacon of hope. With a sweet and feisty personality, she radiates joy and infectious enthusiasm, touching the hearts of everyone around her. Her dazzling smile illuminates my life. Ivory’s journey and diagnosis began around the age of three. After years of searching for answers, following her big sister Jade’s diagnosis, we finally received a diagnosis for her in September 2021. Atypical Neuroaxonal Dystrophy (ANAD), a slower-progressing form of INAD, has not defined her spirit. Early symptoms included unsteady walking and frequent falling due to muscle weakness and developmental delays, yet her resilience inspires us daily.

(INAD) Infantile Neuroaxonal Dystrophy / (ANAD) Atypical Neuroaxonal Dystrophy is a rare genetic disorder of the body’s nervous system. It affects axons, the part of a neuron that carries messages from the brain to other parts of the body. INAD causes loss of vision , muscular control, and mental skills. These symptoms get worse as time passes. There is no cure.

Despite this diagnosis, we remain incredibly optimistic and hopeful that Ivory will triumph over the odds, and her story will serve as a powerful testament to God’s unwavering faithfulness and healing power. Our focus is to keep Ivory active, engaged, happy and living life to the fullest. To follow more of Ivory’s journey, please follow us on Instagram at therareivorykay. Also, follow us on Facebook at The Jadekennedi Foundation. We look forward to sharing more of Ivory’s journey with you.