Jason, Tonya, Grant, and Grace


Podcast Episode Show Notes


Title of Episode

Quotes and Scripture


Featuring

Tonya Goodin

Learn more about the Goodin Family on their website – Grant us Grace.


Their Story

Rare disease can be invisible.  Our family has never looked much different than other families.  Our children Grant (age 9) and Grace (age 11) have always been very active.  Grace has been in dance since she was three years old.  Grant loves playing baseball, basketball, his guitar and harmonica.  Our children had slight needs such as needing speech therapy and occupational therapy to fine tune things, but nothing that ever screamed RARE disease.

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About the Disease

Multiple Sulfatase Deficiency (MSD) is a rare, genetic disease which causes a build up of natural cellular waste throughout the body and leads to a premature death – normally before age 10 years. It is often described as “Alzheimers in a child.”is one of many diseases in a disease family called Leukodystrophies.

Learn more about Leukodystrophies here.

Learn more about MSD Disease here.

 

About Newborn Screening

Learn more about how early detection through Newborn Screening saves lives.