"Mito Kids:" Little soldiers fighting a deadly disease - AmericaNowNews.com

"Mito Kids" fight a deadly disease

Mitochondrial Disease is a debilitating medical condition most people have never heard of, but one that can dramatically shorten a child's life.

Healthy babies who suddenly stop growing, loose muscle tone, and start having seizures may have the disease.

Doctors and researchers say a wrong diagnosis, treatment, or diet can make the condition worse.

The "little star" of the Schulz family in Charlotte, North Carolina, requires extra special star treatment.  

Finn Schulz, 3, has his own special chair and calls himself "Sweetness."

Finn has his own special food fed through a stomach tube, and receives a special supply of oxygen which is always tethered to a tank that follows him wherever he goes.

"That means I'm special," Finn says.

While he may be special, his medical condition is not rare. Mitochondrial Disease is caused by a mutation or deletion on his Mitochondrial DNA.

Every 30 minutes, another child is born as special as Finn who will develop Mitochondrial Disease by the time they turn 10.

"At some point in time, it's going to take his life," Finn's father, Andrew, acknowledges. "With what he's got, doctors say he probably won't live past his teenage years."

Doctors and researchers say that's the case with most of these children who are commonly called Mito Kids.

Unfortunately, there is no cure.  

Dr. William Copeland, Ph.D., is the senior investigator at the National Institutes of Environmental Health Sciences located in Raleigh, NC.

"Its not just one disease, its an umbrella of about 100 to 200 specific name diseases in the medical dictionaries," Copeland points out.

They all have some sort of glitch on the Mitochondrial DNA.

Mitochondria are found in almost every cell of the body and act as a cell's powerhouse by converting food energy into cell energy.

If the Mitochondria is unable to function full-tilt because of a defect on the DNA, the cell can't produce enough energy. Consequently, the cell dies followed by deterioration to the tissue, organ or muscle in which the cell supports.

"The brain and some of the muscle systems will be the first to be affected," Copeland says.

For Finn, his battle with Mitochondrial Disease started at birth and was followed by a year of screaming and violent vomiting.

Then, there were dozens of misdiagnoses and lots of doubt from baffled doctors. 

"That's just terrible to have to present something that's traumatic as this, and then hear someone say, 'You're lying to me,' basically," Andrew Finn says.

With little awareness about Mitochondrial Disease in the public and medical communities, Dr. Heather Baudet understands the frustration. She treats patients with Mitochondrial Disease and was diagnosed herself with the condition in 2008.

"Most people look at me and would never know that six months ago I was in the ICU fighting for my life," Baudet says.

She diagnosed herself in medical school after years of mild fatigue that became debilitating.

Mitochondrial Disease similar to Baudet's condition is becoming more common among adults.

She says the key to keeping both herself and her patients healthy is keeping stress and sickness at bay. This keeps the Mitochondria from burning out and allows the patient to live longer.

Children with Mitochondrial Disease can start to slide and crash from something as simple as the flu.

As for adults who have the DNA defect, researchers and doctors agree you should consider the risks of transmitting the Mitochondrial defect to your future children during discussions about family planning.

As for Finn Schulz' future, there's daily physical therapy with a self-appointed personal trainer, and sand castle building with his sister to help keep his little muscles strong.

"Well, because I 'wuv' him so much," his 4-year-old sister, Candence, says.

As for the cure he needed yesterday, researchers are looking for an answer in gene therapy which they think could be the twinkling light of hope for all the little stars of tomorrow.

Additional Information:

  • Mitochondria are specialized compartments in every cell of the body except the red blood cells. They create more than 90 percent of the energy needed to support life and growth. (Source: United Mitochondrial Disease Foundation)
  • Mito primarily affects children, but adult onset is becoming more common. (Source: United Mitochondrial Disease Foundation)
  • Diseases of the Mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems. (Source: United Mitochondrial Disease Foundation)
  • Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection. (Source: United Mitochondrial Disease Foundation)
  • About one in 4,000 individuals is at risk of developing a Mitochondrial Disease sometime in their lifetime. (Source: National Institutes of Environmental Health)
  • The mortality rate is roughly that of cancer. (Source: Dr. William Copeland, National Institutes of Environmental Health)
  • In some people, Mitochondrial Disease may manifest itself later on in life after an event like surgery or the flu. Sometimes, the Mitochondria are just sustaining the muscles and organs. If the body is suddenly shocked or stressed, the system starts shutting down as the Mitochondria are overloaded. It is critical for people with Mitochondrial Disease to alleviate stress and sickness quickly so as not to tax their system. (Source: Dr. Heather Baudet)
  • Cells cannot even make the RNA and DNA they need to grow and function without Mitochondria. 
  • Mitochondria are also required for cholesterol metabolism, for estrogen and testosterone synthesis, for neurotransmitter metabolism, and for free radical production and detoxification.  They do all this in addition to breaking down (oxidizing) the fat, protein, and carbohydrates we eat and drink. (Source: United Mitochondrial Disease Foundation)
  • Dr. Heather Baudet experienced a lot of GI issues in high school. Once in medical school, she found herself getting blue in the face just walking down the hall. She was always exhausted. Exercising more only made her feel worse. While working in the pediatric unit of a hospital, she read about Mitochondrial Disease and investigated her own symptoms. She was officially diagnosed in 2008.
  • Mitochondrial diseases are either inherited or spontaneous mutations in mtDNA or nDNA which lead to altered functions of the proteins or RNA molecules that normally reside in mMitochondria. 
  • It is a hallmark of Mitochondrial Diseases that identical mtDNA mutations may not produce identical diseases.  Genocopies are diseases that are caused by the same mutation, but which may not look the same clinically.
  • Click for a link to several different types of Mitochondrial Disease.
  • Click for tips on getting a good diagnosis.
  • Click for information about suggested therapies for Mitochondrial patients.
  • Click for information about Mitochondrial Disease in adults.
  • Click for Mitochondrial groups/chapters near you.
  • Click here to read more about Finn Schulz.

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