Mari Ahenakew Pizza Hut fundraiser set for Thursday

Havre Daily News staff

A family is holding a Pizza Hut fundraiser Thursday to help pay for expenses for a 2-year-old girl to received treatment for a rare fatal disease.

Amari Ahenakew 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. It says on its website that symptoms could include abdominal pain, vomiting, tiredness and muscle weakness, and "children with this type of PC deficiency usually die in infancy or early childhood."

Lyle said the doctors told him and his wife, Mercedes, that Amari would not live to see her childhood.

The only treatment for PC deficiency is aimed at providing the body with the nutrients and energy it needs.

Amari is currently on a feeding tube, Lyle said, and she only gets a break from it four hours of the day.

Amari is starting to get sick more often and is spending more and more time in hospitals, her father said. He added that most of the last two years the family has spent its time in hospitals.

Lyle said he and Mercedes are both from Rocky Boy's Indian Reservation and they still have family that live on the reservation. Lyle currently resides in Great Falls and he usually takes Amari there whenever she starts to get sick, although if she becomes very sick the doctors send her to Missoula.

Amari has also spent time at a hospital in Denver and occasionally sees a specialist in Helena as well.

Lyle said it has been hard on his family with all the traveling and hospital stays. Lyle and Mercedes have four children and, he said, it has been hardest on his oldest daughter. Mercedes' mother does help out by watching his oldest daughter so she can still go to school, but Lyle and Mercedes usually take the other two younger children with them when they travel.

The Ahenakews have set up a Pizza Hut fundraiser for Thursday. When customers making a purchase at the Havre Pizza Hut say they are donating to Amari, 20 percent of the purchase price will go to the fundraiser.