Eli's Story

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http://gm-123.org/ Eli was born in March 2009, and progressed pretty normally until about age 18 months. He will be 7 years old in March 2016. At age 2 his development began to slow and gradually regressed. He is currently 6 years old and can no longer walk, is non-verbal, needs a feeding tube and requires full care for all his physical needs. At this time he can hug, laugh with his family, bounce on his knees and eat tiny amounts of certain foods be mouth. When he meets our gaze with eye to eye contact and gives us a sly smile, we are in heaven.

 

Eli has a younger brother named Evan who inherited GM1 Gangliosidosis as well. Evan was born in August of 2012, and progressed pretty normally until about age 2. He is currently 3 years old. His progression has slowed and seemed to plateau this year, but he understands and functions at about an 18 month old level. He has severe delay in his development at this time, with fine motor being weaker in relation to his large motor. He is busy, active, very curious, he wears a helmet to protect from falls, he is approximating some words, and loves to play with other kids at home and preschool. We love his hugs and fun adventurous spirit!