Jade’s journey began at the age of two, when we noticed she had difficulties walking, frequent falls and delayed speech. Over the years we've visited many doctors and specialist and had difficulties finding answers. Jade was able to receive early intervention services, which has helped her tremendously. In 2020, Jade was able to take the Exome Sequence genetics test in which she 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 the Atypical form of Infantile Neuroaxonal Dystrophy which is a slightly slower progression. Ivory, who is Jade’s baby sister was recently diagnosed in December of 2022. We noticed the same type of symptoms.  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. aNAD 
The symptoms of aNAD are more variable than those of INAD with symptoms developing usually by 4 years of age. Delayed speech and autistic features may be the first evidence of disease with regression or slowed development of milestones.

Common muscle symptoms:
-Involuntary muscle contractions (dystonia)
-Poor articulation and speech (dysarthria)
-Muscle tightness and weakness in both arms and legs
-Reduced joint mobility due to muscle tightness
-Overactive reflexes developing early disease
-Absent reflexes developing late in disease

Common neuropsychiatric symptoms:
-Poor attention span
-Impulsivity
-Hyperactivity
-Emotional lability

aNAD shares common eye symptoms with INAD.

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.  Thank you so much for all your donations and prayers throughout this journey.

Edward JOHNSON

Curonda G Wheelock

Josep Self Jr

Dabrame K Self

Paula Stryjewski

Rachel Morton

Anonymous

Dana Carbo

Wanda Anderson

Tanya Wimberly

Ayana Shepherd

Lia Fortier

terry perkins

Help Jade & Ivory Beat INAD

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Help Jade & Ivory Beat INAD

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