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Kingsford boy raising money for Mitochondrial Disease research

October 1, 2012
The Daily News

By LISA M. HOFFMANN

Staff Writer

KINGSFORD - Five-year-old Austin Angeloff is selling ribbons to raise awareness and help find a cure for Mitochondrial Disease.

Article Photos

Lisa M. Hoffmann/The Daily News Photo
Austin Angeloff, 5, of Kingsford, displays the Mitochondrial ribbon and information he is selling to raise money to help find a cure for Mitochondrial Disease. Angeloff was diagnosed with “Mito” and there is no cure for the chronic, genetic disorder.

The Kingsford boy was diagnosed with the condition after many months of testing.

Recently, his mother, Genevieve Angeloff, held a rummage sale.

Austin Angeloff, who has Mito Disease, a genetic, chronic disorder, asked if he could sell lemonade at the rummage sale to raise money for Mito research.

"I was so proud of him," Gen Angeloff said.

During Mitochondrial Disease Awareness Week, Austin Angeloff sold Mito Awareness ribbons at First Presbyterian Church in Kingsford and raised almost $300 to donate to UMDF (United Mitochondrial Disease Foundation).

UMDF promotes research and education for the diagnosis, treatment and cure of mitochondrial disorders. The foundation also provides support to affected individuals and families.

Since 1996, the UMDF has provided nearly $8 million in grants to support the research that may lead to a less invasive diagnosis and ultimately a cure.

Austin Angeloff, the son of Michael and Genevieve Angeloff of Kingsford, said he decided to sell Mito Awareness ribbons at his church "so I could get more money to help them find a cure for Mito."

Gen Angeloff said that children with Mito are often referred to as the "zebra" kids. She said if it looks like a horse, smells like a horse and acts like a horse, one would think it is a horse.

But in the case of Mito, symptoms are similar to that of other childhood illnesses, but in fact Mito is a different disease.

Hence, the green polo shirt with a zebra on it that Austin Angeloff wears.

The "But You Look So Healthy" card that goes with the green ribbons that Austin Angeloff is selling reads, "I live with a rare genetic disorder known as Mitochondrial Disease. It greatly impacts my quality of life. Mitochondrial Disease cannot be seen with the naked eye, but it can wreak havoc on my internal systems. I am blessed that I may be able to 'appear' normal, but the truth is that my symptoms often appear during periods of high-energy demand, such as exercise, illness, fasting, etc. It is unpredictable from day to day or hour to hour. I may look perfectly healthy to you but my cells may be causing extreme pain or muscle weakness. Think of it like an automobile: A car may look brand new on the outside, but without a properly running engine, the car may leave you stranded. My body is the same way."

Gen Angeloff said her son tires easily because his body doesn't make enough energy.

"He is a normal five-year-old boy from the outside. He looks normal, but he will literally run himself down and he ends up in the hospital," she said.

Gen Angeloff added that her son has a feeding tube at night. He is a kindergartner at Woodland Elementary and while at school uses a wheelchair to conserve energy.

"If he were to get an infection, it could be serious as he has involvement of his lungs, GI system, and nervous system," she said.

There is no cure for Mito. Treatment is focused on energy conservation and vitamin therapy.

"Every day he asks me if there is a cure," Gen Angeloff said.

At 18 months, Austin Angeloff had a seizure and a fever of 105 degrees.

It was 30 months and several tests later before he was officially diagnosed with Mito.

The diagnosis came during a trip to a specialist in Georgia.

"He is on supplements that help him function. They basically treat the symptoms, but there is no cure," Gen Angeloff said.

The genetic disease that Austin Angeloff suffers from could have been given to him from his mother as she said she also suffers from similar symptoms, mainly low energy.

Gen Angeloff said the life expectancy for a child with Mito is short-lived.

"Hopefully by the time he is older, there is a cure," she said. "Without hope, it is easy to crawl into a ball."

The Angeloff family is trying to live as normal of a life for as long as they can.

Austin Angeloff will sell his Mito Awareness ribbons during a craft show at the Midtown Mall on Oct. 13.

In the meantime, he is still accepting donations to help raise awareness and find a cure for his disease.

To donate or purchase a ribbon, contact Gen Angeloff at (906) 396-1578.

Lisa M. Hoffmann's e-mail address is lhoffmann@ironmountaindailynews.com.

 
 

 

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