Why Parents Must Be Aware of Mitochondrial Diseases

When a child is sick, we rush to saving her by taking to the doctor’s, administering the prescription, and following all the right things to make her feel back to normal. It is what parents do.

But what if there’s a situation when parents, and the doctors, cannot figure out what’s going on and what is wrong with a child. There is a myriad of autoimmune disorders that literally take a ton of time to be correctly diagnosed. One of the rare diseases that affects children is mitochondrial disease. Find more about this disease at mitoaction.org.

I think every parent needs to be aware of this condition. As parents, we can become a support group to those who need our help. As moms, we network and we talk about many things. Our individual knowledge could become a savior for someone out there.

The Facts About Mitochondrial Diseases

• Mitochondrial disease includes a group of neuromuscular diseases caused by damage to intracellular structures that produce energy, the mitochondria; disease symptoms usually involve muscle contractions that are weak or spontaneous.

• There is no specific treatment for mitochondrial diseases (myopathies).

• The prognosis varies according to the disease type; in general, these diseases are progressive and can cause death.

• Research into treatments and other disease aspects is ongoing; there are several organizations devoted to understanding and treating these relatively rare disorders

Possible Symptoms of Mitochondrial Disease

The prognosis for mitochondrial disorders ranges in severity from progressive weakness to death. Most mitochondrial diseases aka myopathies occur before the age of 20, and often begin with exercise intolerance or muscle weakness.

BRAIN – Developmental delays. Migraines.
NERVES – Weakness (may be intermittent), Fainting.
MUSCLES. Weakness of many muscles
KIDNEYS – Renal tubular acidosis or wasting.
HEART – Cardiac conduction defects (heart blocks) …
LIVER – Hypoglycemia (low blood sugar).
EARS & EYES – Visual loss and blindness.
PANCREAS & OTHER GLANDS –Diabetes.

Is Mitochondria Disease Fatal?

If a lot of mitochondria in the body are affected, especially in important body organs, Mitochondrial Disease can be very serious and often fatal. Each affected individual will have different symptoms and severity of the condition. … Mitochondrial Disease is not a single disease but more like a collection of conditions.

Why to Read the Book that Deals with Mitochondrial Diseases?

Children with mitochondrial disease are more prevalent than those with childhood cancer. Yet, the disease is still very poorly understood and often misdiagnosed. In this story, as in actual life (the book is fiction based on fact), the misdiagnosis leads to uninformed medical and social services staff to accuse the parents of neglect. This happens with other rare diseases as well and from other situations. Part of the book is battling these powerful, but ill-informed people in court for custody of the child while they slip into a coma.

The book is also about June, the mother, finding her voice and stepping out of what is expected and perhaps appropriate in order to save her child – it’s motherly love. It is also about friendship – the ones that weren’t real and the ones that are formed under dire circumstances, coming from sources that are unexpected. And, there are emotional moments when June meets the little girl she pulls from a car accident and saves. June is a hero-unwittingly.

All the women in the book, the major characters, are named for women who pioneered their roles. For example, a reporter who turns into a friend is named after one of the first female reporters; a doctor named after a pioneering women doctors. No one so far has picked up on that but, it is there as part of the other characteristic of the book, presenting ordinary people having profound effects on their neighbors through personal strength of character. In this case, it is strong women.

There is a lot of humor as well. June describes herself as having had very curly hair and an artists passion. The curls, she says, straightened as she aged, the passionate kinks not so much. That leads to some interesting situations for June.

Finally, the book is about family. An average family, going about their lives in an average way until devastation hits. Whether loving or liking the book, most all of the reviewers say it is a good, well-written story.

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The book is written such that the family discovers what the disease is and the reader does along with them. Author Michael Conant tried to make the book a good story as much as a book about mitochondrial disease – to make it more suited for the public interest.

The protagonist is June Gallagher, the mom of the sick child. The title refers to the passing on of the mitochondria gene from the mother-moms with mito kids refer to themselves as mito moms.

Much more research and advancement in treatment are needed to save all the children who live with mitochondria diseases.

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