Family asking for help dealing with child's rare disease

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 could include abdominal pain, vomiting, tiredness and muscle weakness.

The NORD page says "children with this type of PC deficiency usually die in infancy or early childhood".

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

The Ahenakew family has started a GoFundMe campaign and is asking for donations to help them pay for the cost of travelling to different cities for doctor's visits for Amari. They also have set up a Pizza Hut fundraiser Thursday, Nov. 8. 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.

The doctors, Lyle said, told him and Mercedes there is no cure for PC deficiency because of how rare it is.

NORD confirms this and says 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.

"If she goes any longer than four hours," he said, "she'll get sick. She gets sick really easy."

Lyle said with winter coming, Amari is starting to get sick more often and is spending more and more time in hospitals. He added in the past two years he and his family have spent about a week total at home, but the rest of time has been 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.

"If she gets too sick they usually send her to Missoula," Lyle said.

He added that he and his wife are good about getting Amari to the local hospital before she gets too sick.

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

Mercedes said the doctors have been amazing.

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.

Lyle and Mercedes haven't told their oldest that her little sister might not live to early childhood because they don't want her to feel bad. She is aware that her little sister does have a rare disease, though.

Lyle said he is holding up all right so far despite the cost of traveling being hard for them. They've had to stay in the Ronald McDonald house in Missoula before and have even spent nights in their car, Mercedes added.

"We hope she stays with us for a while," Lyle said.