Meet Remi Savioz, a beautiful, curious, energetic 13-year-old girl with a spirit and smile that captivates everyone she encounters.

When you first meet Remi, you will notice that she has speech difficulties and some physical challenges.  You will also notice that she has a tremendous enthusiasm for life and making friends.  What is not immediately evident is the remarkable challenges Remi has overcome in her young life with her steadfast determination and pride.

Starting with her first seizure at 3 days old, Remi’s first year of life was marked by struggles associated with unexplained sickness and subsequent hospitalizations.  She experienced a host of medical symptoms, including near constant seizures, unexplained fevers, tremors, dystonia (sustained twitching/abnormal postures) and hypotonia (low muscle tone).  She didn’t meet any normal developmental milestones.  She didn’t roll over as an infant and did not sit until she was almost 4 and a half years old.  Walking did not come until age 5 and, even then, she experienced uncontrolled movements, tics and falls.  Remi wore a helmet until she was 8 to protect her head from her falling and dropping episodes.  Remi was finally diagnosed correctly after 8.5 long years of failed and misdiagnosis.

Remi continues to inspire and amaze us and everyone else who is lucky enough to know her.  She wants to be understood and engaged by them.  Remi continues to make “progress” thanks to the diligent and loving care of her sister, her family, doctors, friends and us.  Remi is source of motivation for her peers and family, and inspires everyone that she meets with her willingness to perservere regardless of the obstacles she is constantly forced to try and overcome.  Remi is a peaceful soul.  She has a never ending smile that is contagious.  She touches so many with her gifts.  We are so inspired to “Make A Difference” for Remi and others like her we named a foundation after her:  The Remi Savioz Glut1 Foundation.

Samra Savioz
Pennsylvania

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