Stories of NF: Jai

My name is Jai and I am a NF fighter and survivor. I was born in India to very poor parents who abandoned me when I was 9 months old. They could not properly care for me because of my medical issues, my living conditions, or their educational knowledge. I think for their best interest they wanted to do right by giving me the best chance at life, and that’s why they placed me in front of an orphanage hoping I would find a family that could love me and properly take care of me. I lived in the orphanage until the time I was 7 years old. I was adopted by a wonderful couple in America; they were my saving grace. They adopted 17 children all with special needs from different nationalities and backgrounds.

I was diagnosed with NF1 at Shriner’s Children Hospital. I was treated at the hospital from the time I was 7 until I was 22 years old. I have had numerous surgeries throughout my life; I’ve had back surgery, tumors removed from my knees, hips, legs, neck, and eyes, amputations of my legs, treatment for blood transfusions, plasma replacement, treatment for infections, and many others I can’t remember. I have many medical conditions such as scoliosis, hemophilia, hepatitis B, thalassemia, chronic pain, arthritis, bone deformity, I have a huge plexiform tumor on the right side of my body that’s inoperable. I am a double amputee and wheelchair bound. I have learning difficulty, vision loss, hearing loss, and speech impairment. I am facing more invasive surgeries on my neck and back.

I have worked at the Deaf and Blind School, Daycare, Walmart, and have volunteered various places. I live independently on my own with my two cats Maddie and Dezi they give me peace, love, healing, comfort, and joy. I love to cook, read, listen to music, crochet, draw, write, making jewelry and other crafts. I love animals and children. I love being in nature and going on adventures. I love learning and studying about different ethnicities, religions, faiths, animals, and cultures.

Despite all the challenges I endure and experience every day in my life I manage to conquer each day with a smile to being grateful I have lived another day and survived. I am blessed to the love and support of my family, friends, neighbors, fur babies, doctors, caregivers, my little kid friends, and so many people I have met and encountered. I am blessed to my dad JJ, my best friend and sister Monique, my best friend Kimberly, and my friends at my complex who watch out for me and step in to take care of me whenever I need their help. I know this for sure that I am loved unconditionally by so many people.

Above all I am truly blessed and grateful to my parents who adopted me. I wouldn’t be here today if it hadn’t been for them they saved my life. I dedicated this to my late mother Sharon and my father JJ.