“Amidst the many struggles that she has endured in her young life, she continues working hard to attain the things that appear just out of reach, physically and figuratively. Her determination is one of her greatest strengths!”
A Message from Malasia’s Family:
Malasia, called “Asia” for short, is a sassy little princess who will make you laugh while also melting your heart if you give her enough time to get comfortable around you. She loves playing at the park, climbing, coloring, building blocks, connecting magnetic tiles, watching her favorite shows, and playing with her three sisters. Amidst the many struggles that she has endured in her young life, she continues working hard to attain the things that appear just out of reach, physically and figuratively. Her determination is one of her greatest strengths!
Some of the many challenges she has endured include swallowing difficulties, gastrointestinal issues, tics and tremors, seizure-like episodes, sleep disturbances, hyperactivity, developmental delays, multiple speech diagnoses, hand stereotypies, toe walking and toe curling, balance episodes, sensory challenges, breathing disturbances, bruxism while awake, self-harming, and diminished pain response. Multiple years of genetic testing returned without any confirmed genetic answers for both her and her older sister, Araya, who also presented nearly identical symptoms. When Asia was an infant, Araya was clinically diagnosed with Rett-Like Phenotype, due to the Rett syndrome symptoms presented and the inability to locate the typical gene mutations for Rett syndrome. Finally, a genetic test revealed that Araya and Malasia both have the same deletion on their KIF1A gene, which is a known genetic variant for Rett-Like Phenotype.
Although the symptoms of their KIF1A deletion challenge the daily lives 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!
