Prayer for Princess Lily with Lysomal Storage Disorder

March 27, 2014

Lily Faith is 14 months old and she has a rare disease called Lysosomal Storage Disorder type MG1 Gangliofidosis.

There has only been 200 cases, and all of the children that have had it have not made it past the age of three years old. It is attacking all her major organs and enlarging them.

She is not mobile at all, and she is on a permanent feeding tube. The doctors told us that she will not make it to three years old, then when she went back for a check-up, they changed her life expectancy to two years old.

The best doctors in Atlanta have never heard of the disease and didn’t have a cure or treatment for it, so they sent her home.

We are looking for help or information on how we can treat this precious baby so we don’t lose her. Spread her story so, we can find all the help and prayers we can get!

Stay Connected

Sign up for updates straight to your inbox.