My name is Natty and my baby Akemi Hodai has Methacromatic Leukodystrophy.  She was diagnosed on May 19, 2011, and she is now three years old.  Metachromatic leukodystrophy (MLD, also called Arylsulfatase A deficiency) is a lysosomal storage disease which is commonly listed in the family of leukodystrophies as well as among the sphingolipidoses as it affects the metabolism of sphingolipids. Leukodystrophies affect the growth and/or development of myelin, the fatty covering which acts as an insulator around nerve fibers throughout the central and peripheral nervous systems. MLD involves sulfatide accumulation.

This process of receiving this rare disease diagnosis has been really hard on our family but our faith continues to grow. Our belief is that our daughter is going to be healed by God and this miracle will be the hope to many people around the world.

Click here and you will see a video I made for my baby.

 

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