Emmanuel's Rare Battle

Until Emmanuel turned 1 he laughed, smiled, and moved like any other baby. But then, in an alarming way, he began losing skills like walking, talking, and chewing. Desperate for answers, Emmanuel’s Mom Sivi took him to specialists around the country for four years. The National Institutes of Health finally solved the mystery. It turns out that Emmanuel suffers from a rare genetic condition called infantile neuroaxonal dystrophy or INAD. He is one of only a few people worldwide who have this dreadful condition, which has no treatment or cure. Instead of progressing, these children regress until they’re like newborns again. Emmanuel now must be carried since he is limp. He is nourished through a feeding tube, and his vision, hearing, and heart function are severely impaired. Worse, his airways have begun to collapse.

Unfortunately, INAD is one of the so-called “orphan diseases” that afflict tiny numbers of people and therefore attract little research and support.

Our desire is to lift up Emmanuel’s family. His father has left, so Sivi has sole daily care of Emmanuel and his sister Chloe-Ann, 9, and brother Samuel, 7. With Emmanuel’s devastating needs, Sivi has had to quit her job and the family needs have become even more overwhelming. It is difficult now to lift Emmanuel at almost age 6. He  is in need of a modified/handicapped-accessible van.

We -- the friends of Emmanuel - feel led by God to reach out on behalf of his family. We hope to raise enough funds for a van, a stair lift, and other financial needs - all for the love of Emmanuel, who turns 6 on March 28. His disease may have stolen his smile, but not his place in our hearts.
Full of life on his first birthday!

At the National Institutes of Health for his diagnosis.

Precious time with sister and brother...

For the love of Emmanuel.

Donations

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  • Anonymous 
    • $40 
    • 64 mos
  • Anonymous 
    • $30 
    • 65 mos
  • aravind sivaraman 
    • $50 
    • 66 mos
  • Julia Salinas 
    • $25 
    • 68 mos
  • Anonymous 
    • $100 
    • 68 mos
See all

Organizer

Tibbie Duong 
Organizer
Cary, NC
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