“Amidst the many struggles that she has endured in her short life, she continues to spread her strength and light to the world!”

A Message from Araya’s Family:

Araya is truly a ray of love everywhere she goes! She loves to give big bear hugs, snuggles, and eskimo kisses. She also loves dancing, yoga, swimming, playing at the park, art activities, watching her favorite shows or music videos, playing with her three sisters and making new friends! Amidst the many struggles that she has endured in her short life, she continues to spread her strength and light to the world!

Some of the many challenges she has endured include eating and swallowing difficulties that have led to a feeding tube placed in her stomach, movement disorders that have required significant therapies to regain the abilities that she had once lost, seizure-like episodes, gastrointestinal issues, severe sleep disturbances, hyperactivity, developmental delays, multiple speech diagnoses, hand stereotypies such as hand wringing and finger twisting, toe walking and toe curling, balance episodes, severe body temperature regulation difficulties, sensory challenges, breathing disturbances, bruxism while awake, among many others. Over the years, Araya has received many different forms of therapies, including Occupational, Speech, Feeding, Physical, and Applied Behavioral Analysis. She is excited to also begin hippotherapy soon, which is therapy focused on the improvement of Araya’s health with the use of horses. Araya also loves our family pets that provide her unofficial pet therapy!

Through the years, her struggles have required the assistance of medical devices such as ankle and foot orthotics, a reverse walker, a wheelchair, a medical high chair, a medical car seat, and an augmentative communication device. Thankfully, with the assistance of her medical team, therapies, equipment, and her relentless determination, Araya has improved far beyond what was ever expected and has overcome the need for most of her equipment up to this point. We hope she continues to retain these abilities for many years to come, while we also prepare to armor ourselves with knowledge of her diagnosis to best advocate for her needs. Araya had been diagnosed with Autism, Rett-Like Phenotype, Chorea and Dystonia. Years of genetic testing returned without any clear answers for both Araya and her little sister, Malasia, who also presented nearly identical symptoms. Araya was given the clinical diagnosis of Rett-Like Phenotype due to the presentation of Rett syndrome symptoms without the typical Rett syndrome gene mutations. Finally, a genetic test revealed that Araya and Malasia both have the same deletion on their KIF1A gene, which was previously known as a genetic variant for Rett-Like Phenotype.

Although the symptoms of KIF1A challenge the daily life of our entire family, Araya and Malasia bring a special love and spirit that unite us into becoming better individuals, while helping make the world a better place!

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