My Sweet daughter Jade has a smile that’s worth a thousand words. Her easy going, joyful and adventurous personality has always brighten the lives of the many people she has encountered. Her journey began at the age of two, when we noticed Jade had difficulties walking, frequent falls and delayed speech. Over the years we’ve visited many doctors and specialist and was first given a misdiagnoses of Neurofibamatoses type-1. Despite the misdiagnosis and difficulties finding answers Jade was able to receive early intervention services, which has helped her tremendously. Earlier this year Jade was able to take the Exome Sequence genetics test in which she recently received the diagnoses PLA2G6 related disorder with two pathogenic variants of the PLA2G6 gene. Through further evaluation we were able to specify the type of disorder to “Atypical Neuroaxonal Dystrophy”.
PLA2G6 -associated neurodegeneration is an extremely rare, inherited degenerative disorder of the nervous system characterized by abnormalities of nerve endings within the brain, spinal cord and peripheral nerves. Also characterized by psychomotor delay and regression, increasing neurological involvement with symmetrical pyramidal tract signs and spastic tetraplegia. The prevalence for PLA2G6-associated neurodegeneration as a group is estimated to be about 1 in 1,000,000 in the general population.
Despite this diagnosis we are so optimistic and hopeful that Jade would defy the odds and that her story will be a testimony of God’s faithfulness and healing power. Our focus is to keep Jade active, engaged, happy and living life to the fullest. To follow more of Jade’s journey please follow us on Instagram @jadekennedifoundation. Also follow us on Facebook at The Jadekennedi Foundation. We are looking forward to sharing more of Jade’s journey with you.
If you would like to donate please donate below, anything helps. The funds will be used to pay for medical visits not covered by insurance, mobility equipment, and any other associated expense regarding future medical visits and expenses. A portion will also be donated to the INADcure network in hopes of funding research to find a cure.
Thank you so much for all your donations and prayers throughout this journey.
Help Jade Beat INAD!
“You were given this life because you are strong enough to live it”
The Jade Kennedi Foundation
The Jade Kennedi Foundation was created to help provide support, community, awareness and to help fund research in hopes of finding a cure. If you would like to make a donation to further research check out the INADcure website by clicking the link below. https://inadcure.networkforgood.com \