Family fights the hard-knocks

Published 2:21 pm Saturday, October 18, 2008

The hard reality is many people suffer and need attention.

The problem: Not all of them will receive that attention.

It’s a lot like life: Unfair, arbitrary and capricious.

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Who lives, who dies, who gets better, who gets worse, who wins, who loses. Who, indeed?

Pick up a handful of sand from any beach and watch the pebbles slip through fingers.

Life is like that: people trying to hold on.

Kelli Dietrich knows all about this. When the spotlight of attention shines on her daughter, Meagan ReNee’, the mother knows there are so many more lingering in the shadows, waiting their turn.

What’s a mother to do for a child?


Not hardly.

Dietrich does her best.

“A lot of times we could be at a crisis point and no one else knows it,” she said.

Shane and Kelli Dietrich have one child together and she has four other children — ages 4 to 19 — by a previous marriage. A son is the oldest child. All the others are daughters.

Shane works at International Paper. The husband and wife each grew up in small towns, but have family in Austin where they have lived for the last six years.

Meagan, 8, has several disabilities.

The main one the parents are now focusing upon is a mitochondrial disorder.

“To put it into easy terms that everyone can understand,” the mother said, “it’s a disease of energy.

“We all have cells in our body and within those cells are what is called ‘mitochondria,’ and they are what produces our energy for muscle functions and physical activity,” she explained. “When there are defects in the mitochondria, you have less energy for anything the body needs energy for: the heart pumping, breathing, exercise … anything.”

The mother explained her daughter’s multiple disorders as simple as she can. Resisting the temptation to sound like a Wikipedia entry, she has not mentioned anxiety disorder, selective mutism and sensory processing disorder.

Neither has she mentioned mitochondrial is a genetic disease.

Blood work tests on the mother confirmed this.

“We don’t know a whole lot yet, but we do know we probably passed it on to her,” she said. “She has two bad genes that are worse than either of ours.”

Meagan has been treated for the disease since she was 1 year old.

The specific diagnosis came this summer.

“It’s still not 100 percent definite,” she said. “But based upon on the tests, all the labs, everything they had, the doctors say it is some kind of mitochondrial disease. They just don’t know which one.”

Most likely, the 8-year-old is a carrier for “Carnitine Transporter Defect,” which is a life-threatening mitochondrial disease.

“She deals with low muscle tone which affects her heart, digestive tract — causing constipation — and overall muscle coordination,” the mother said. “We’re kind of stuck in a rut right now.”

The family has taken Meagan to doctors at the Mayo Clinic and the University of Minnesota Children’s Hospital, but feel the only logical step at this time is to take her to a mitochondrial specialist. The nearest one is at a hospital in Ohio.

“We have sought out one of the leading specialists in the world,” the mother said. “There are five of them in the United States and we ended up getting accepted in Ohio.”

Just one more thing to worry about in a family that has many.

Home school parent

The couple has a 16-year-old daughter who attends high school classes.

Kelli home schools three other younger children.

She has taught herself to become an expert on her daughter’s disease.

What the mother failed to say until the end of the interview is that she also suffers from a mitochondrial disease.

The Ohio specialist may provide answers that have not found elsewhere and time is running out.

“He’s highly trained in mitochondrial disorders,” the mother said of the Ohio specialist. “We’re very excited about the opportunity to take Meagan to Ohio.”

Like everything else, it seems, there is a price tag to consider.

It’s a matter of steadily increasing expenses. Drugs, doctors and other day-to-day expenses have depleted the Dietrich family’s savings; thus, they are asking for donations to help Meagan get to Ohio and the family to learn how they can deal with their daughter’s predicament in life.

Until then, the mother does it all.

“She has two disabilities that we have to continually watch and deal with at home: either medications or therapy,” she said. “Her day is completely filled with joint compressions, brushing (her exposed skin to treat a sensory processing disorder), working with elastic bands to strengthen her muscles. We have vibrating machines we use on her to stimulate her muscles,” she said.

“It fills the whole day: morning, noon and night,” she said. “Because I home school the girls, it’s easier for me to do the therapy for Meagan.”

The little girl’s energy level is quickly exhausted. “She will play a little bit and then she will sit down. She cannot continually run or play like other kids,” she said.

“Another thing: Heat makes it worse,” Kelli said. “In the summer, she would play outside in the morning when it was cool and after supper when it is getting dark.”

Again, it is important to remember: the mother has the same problems as her daughter.

The family is planning to go to Ohio Dec. 10.

“We need the money. If we don’t get it we’ll still go, but we’ll be deeper in debt than we are now,” she said. “It’s really important to us that we take Meagan to the specialist.”

Muscle cramping, muscle fatigue, hypoglycemia, low heart rate, special diet restrictions … it clouds the life of the mother and her child.

Normalcy? What’s that?

When husband and wife desire a break from the constant attention they must give their daughter, those times are hard to find.

“It is really hard for Meagan to do sleepovers because we have to train someone to watch over her,” Kelli said. “Babysitters are hard to find. Usually when you tell people about everything that could happen — she could have a coma, seizure or even death — they get scared and don’t want to do it.”

So, the mother — with help from her husband, her mother at Albert Lea and a few others she trusts — goes it alone.

Her other daughters watch her mother struggle. Friends and neighbors are sympathetic but on the outside of a very complex situation.

Friends at Cornerstone Assembly of God Church, too.

Against all odds, the mother has soldiered on. Trying to be all things to her family.

“I think when you first go through it,” she said speaking in the third person, “you’re kind of crushed.”

“You go through the grieving process. Then, you go through fear and then you wonder if she is going to die,” she continued.

“Now, you are into such a routine and it just becomes a part of your life that you must do this,” she said of her mother’s role in the family.

In addition to avoiding speaking in the first person “I” singular, she has dodged talking at length about her own mitochondrial disorder and how it has changed her life. For instance, she had to give up working, when she lost her daycare when providers refused to take care of Meagan because of her special medical conditions.

And with the realization that there is always another child — many children, in fact — with equally serious medical needs or even worse, the mother puts her daughter first in her life.

Meagan needs a ticket to ride the train with her family to a hospital in Ohio to see how long she will live and how she will live.

“Part of our problem is that people see us and they don’t believe anything is wrong,” the mother said. “That’s because she looks all right and good, but just because she looks good on the outside doesn’t mean the muscles aren’t breaking down and there are problems on the inside.”

A mother knows her child inside and out.

Wells Fargo Donation Account

Interested individuals may deposit their donations in the Megan Blankenship Donation Account in care of Kelli Dietrich at Wells Fargo Bank Austin, 501 North Main St., Austin, MN 55912.

For an update on her condition, go to