I went exploring today.  There are a lot of cruel diseases and physical conditions in this world.  This turns out to be one of the more unpleasant -- and relatively common -- ones.  This is what my cousin's son must fight through in order to survive. [see previous post] If the disease pulls the body's energy plug, so to speak, what does one have left to fight with?

Pray for Carl and his family.  Give thanks for something positive in your own life.
Don't forget to pray ....

* * * * *

Mitochondrial Disease

Overview of Mitochondrial Disease

Mitochondrial disease or dysfunction is an energy production problem. Almost all cells in the body have mitochondria, which are tiny "power plants" that produce a body's essential energy.
Mitochondrial disease means the power plants in cells don't function properly. When that happens, some functions in the body don't work normally. It's as if the body has a power failure: there is a gradation of effects, like a 'brown out' or a 'black out'.
Scientifically, it is actually a category or group of diseases. That's why mitochondrial disease takes many different forms and no two people may look alike.
It can look like any number of better known diseases: Autism, Parkinson's, Alzheimer's, Lou Gehrig's disease,muscular dystrophy and, chronic fatigue. Staying with the power plant analogy, power plants provide energy to a large community with each part of the community requiring varying degrees of power; in the same way, mitochondria provide energy to various organs of the body. So, when there is a mitochondrial dysfunction, a "black out" looks like Leigh's Disease, severe and fatal, while a "brown out" might be severe, but not lethal.

 What Happens To You When You Get It?

Mitochondrial disease primarily affects brain, heart and muscle in varying levels of severity.
Depending on which cells of the body are affected, symptoms may include:

• Poor growth
• Loss of muscle coordination, muscle weakness
• Visual and/or hearing problems
• Developmental delays, learning disabilities
• Mental retardation
• Heart, liver or kidney disease
• Gastrointestinal disorders, severe constipation
• Respiratory disorders
• Diabetes
• Increased risk of infection
• Neurological problems, seizures
• Thyroid dysfunction
• Dementia

In school, children with mitochondrial disease often seem to work in "spurts" and then "peter out," becoming lethargic and finding it difficult to concentrate. It is essential to understand that these periods of fatigue are not due to the child "zoning out," but rather total exhaustion from deep within the cellular level of their existence.It ranges from intermittent difficulty thinking, remembering, moving and acting, to severe handicaps. Some results may be fatigue, muscle weakness and diabetes. And all this is overlaid by good and bad days caused by significant inconsistency-like the electricity flickering in different areas of a community.
Though the impression most have of mitochondrial disease is a disorder that presents itself at birth, it can appear at any age. For some it develops over time. We're learning it's not at all rare but, due to a lack of physician and public awareness, this disease is not often diagnosed. Only in the past 10 years, with advances in genetics and molecular biology, have we a better understanding of the complexity in mitochondrial disorders. Even so, the definitive cause (or causes) of mitochondrial disease continues to evolve.
1 in 2,500-3,000 are affected by mitochondrial disease
1 in 2,500 are affected by Cystic Fibrosis
1 in 110 individuals are affected by Autism
1 in 500 are affected by Parkinson's
1 in 85 are affected by Alzheimer's
1 in 25,000 are affected by Leigh's Disease, a fatal form of mitochondrial disease
1 in 50,000 are affected by Lou Gehrig’s Disease (ALS)

Wisdom. Trust. Healing

A cousin is the father of a physically and mentally challenged child who is nearly an adult.  For most of the last week, the young man has been lying in a hospital intensive care unit, fighting for his life.  My cousin posted this yesterday:

... Update: C's vitals took a positive turn at least for a while there. They tried twice to ween him off of the ventilator but he is still not strong enough to breathe on his own so they will wait until tomorrow to try again. They have now re-sedated him so he can continue to heal and strengthen. This is going to take a lot of time so we are trying to settle in for the long haul.

As [my wife]  and I say, baby steps and they are still progress.

This is a lot better than the day before, when there was real doubt that he would survive the next 24 hours.

Pray for this young man as he struggles for healing, and for his family as they do the  things they can -- wait.  trust.  touch.  pray.  

Pray for those you know who are ill, alone, in need.  Reach out.  Hug someone and let them know you care. 

* * * * *

An Open Letter to a Granddaughter -- Part I

It’s the day after the shooting in the very upscale private school in Connecticut.   

As you can imagine, I am deeply troubled by all these seemingly senseless killings.  This is one of those times when I badly need to share with – talk to – gain perspective from someone or several someones in your age group and your circle of friends.  Please understand that I am not trying to be critical.  I am groping for understanding, and because I don’t understand some of my comments may sound critical.  Please jump over that level of response.  Lets try to get to the place where we can talk openly and look for share understanding and agreement.  I am beginning to believe that solutions lie not in my generation, and only partially in the generation of my children.  WE are looking at the world with a different sent of eyes and experiences.  The solutions need to come from YOUR generation.  

Once upon a time we joked about “going postal” because it was the post office employees who in frustration walked into their workplace and shot people.  Usually their supervisor. Doesn't mean all postal workers are murderers.

Earlier this year a homeless man walked into a church office in Maryland and killed a priest and the church office administrator.  He was a man with known mental health issues, known to the church community through their outreach ministry to the homeless.  The shooter at Virginia Tech had known mental health issues.  So did the shooter in the theater in Aurora, Colorado.  Doesn't mean all homeless people or all people with mental health issues are capable of murder.  

Many of the school shootings involve a shooter who is somehow linked to the Goth sub-culture.  We hear that Goths are often loners, obsessed with death, heavily involved in role playing, often feel alienated, enjoy the shock value of their style, dress, and statements.  We are told we can recognize Goths on the street by their long trench coats,  black clothing and extremely light make-up, by multiple body piercings, "weird" hair styles and heavy jewelry.  Does this mean that all role players are goths, that all online gamers or folks who suffer from depression are likely to commit mass murder, that everyone with body piercings is somehow tainted, that horror literature and vampire stories should be outlawed?

"I don't think so!" says she who enjoys fantasy games and fantasy literature, wears lots of black, has taken anti-depressant medication, has been known to wear two earrings -- in each ear -- and has been accused of "wearing some strange get-ups" after wearing a Hawaiian dress (as in more formal, not as in a garment with a skirt) muumuu in public outside Hawaii. 

While it is true that guns are a common factor in most mass killings, they are not the only common factor.  The component that I do not understand is the Goth sub-culture. While not all Goths are mass murders, it is true that many mass murders are Goths.   Help me understand what the sub-culture is all about, what draws one in, what holds him or her there?  Are we seeing another example of a reasonable belief being tainted by the polarizing views of extremes within the community?   Or is the whole sub-culture somehow tainted?   Is it important to reach out  to the lonely and alienated?  If throwing words at each other that neither side hears or understands is not communicating, how does an outsider speak meaningfully to a Goth? 

What about gangs?  Are gang members the opposite extreme from Goths?  Or are both cultures meeting the same needs in different ways? 

How can I touch one life to move it in a postive direction? 

Pray for open communication.  Pray for understanding.  Pray for positive social action.   

* * * * *

Looking for Tonka

Somewhere out there is a woman in her mid-40's who as a toddler bore the nickname Tonka.  Yes, she loved those trucks!  Her real name is Christina, and she was probably born in Arizona.  Her mother came from Texas; her father was ethnically Mexican, but may or may not have been a Mexican national.  She has at least two siblings -- a sister Shelley  and a brother Jamie.  By 1977 Jamie was living happily with an adoptive family in Tuscon.  We never found Christina or Shelley.

Tonka's mom and step-father were married in Los Angeles in 1968, but were back in Arizona and living in Phoenix by 1969.  They lived in a large mobile home in a park on what was then the southwest edge of Phoenix.  You could watch the movies at the drive-in theater next door from their living room window. 

When Tonka's mom and step-father split, mom left the 3 kids with a sitter.  (step)Dad, who was working out of town that week, tracked the kids down when he got home and found his wife gone.  His version of the story is that he came home to an empty trailer pad, a full garbage can, and an emptied bank account.  He tried to keep the children, but he says the laws in Arizona at the time declared that a young single man (man being the operative) could not adequately care for three pre-schoolers on his own.  They took the children into foster care over his protests, and effectively drove him out of Arizona.  He went home to Utah, bounced around the western US for a few years, and eventually settled in California.  There he divorced, remarried, lived, and died. 

He carried a small collection of photographs of Tonka and her siblings until he died.  The children -- and their photographs -- were very precious to him.  He thought Shelley went to her maternal grandparents, but often wondered what became of Tonka.   The State of Arizona did not pursue the girls in 1977 as they did Jamie because he had no legal responsibility for or claim on them. 

Tonka, if you're out there, I'd love to hear from you.  Respond to this blog with identifying information about your mother and about a childhood health issue.  No strings attached, just hope to resolve one of those loose ends in life. 

Have hope.  Give thanks for loving families.  Pray for children who are alone, whether abandoned or orphaned.  ...

* * * * *

Witches of Salem

Here's another tidbit of information that came my way because I am a genealogist.

I recently picked up a novel off the Kindle Free Books list.  Those books are not always the highest quality literature, but do open some unusual doors.   This novel is contemporary in setting, but the premise is  that the events in the life of the protagonist are the direct result of his ancestor who was innocent but nevertheless hanged as a witch in Salem, Massachusetts in 1692.  That prompted me to learn more about the Salem Witch Trials.

I was surprised to discover that there were not many, many Salem Witch Trials, but one basic event with only a handful accused (relatively speaking), and not all of them executed.

One of the most outspoken of those executed -- and one of the central characters in "The Crucible" -- was John Proctor.  His wife was also accused, but not executed because she was pregnant.  The couple's youngest child was born after his father's death and while his mother was in prison.

I have Proctors in my family tree.  They come from Virginia.  But I don't think my mom has ever identified the immigrant ancestor.  I wonder if my Proctor ancestors came to Virginia from Massachusetts?

My most recent ancestor who carried the surname Proctor was a woman who died about 1845 in Tennessee, age about 96 years.  At least two generations of her ancestors were from Virginia.  Her children were born in North (and/or South) Carolina.  Her first husband was a Mr. Morris.  We know almost nothing about him, but there are suggestions that he was from "up north".   As Massachusetts??? 

 *****