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Family asking for help dealing with child's rare disease

 

October 18, 2018

Courtesy photo

Amari Ahenakew

Amari Ahenakew is 2 years old and she has a fatal rare disease that requires her family to travel across Montana to get the medical help she needs.

Amari was diagnosed with pyruvate carboxylase deficiency type A on June 19, 2017, her father, Lyle, said.

The National Organization for Rare Disorders describes PC deficiency as a genetic disorder that inhibits the body's ability to produce the necessary fuel for energy and neurotransmitters important for brain function.

There are three different types of PC deficiency: type A, B and C. Type A, that Amari has, is the infantile form. Symptoms...



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