What is wrong with Megan?

Note: Ken suggested it was time for this subject when I asked his opinion on what to write about this morning because I was at a loss for words. This is one of the posts I have been dreading. (Thank you, Honey!) I was not exactly sure how to start, so I just started typing. I have shared this type of information with various people before but never quite like this.

"What is wrong with Megan?" I get this question all the time from complete strangers, acquaintances, and even close friends. Sometimes the form of the question is varied. "Why is she in a wheelchair?" "What type of sickness does she have?" "Why is Megan different?" "What do you want us to tell other people when they ask about Megan?"

To be quite honest, depending on the day, who is asking, and how I am feeling at that very moment second, I respond with a variety of answers like, "Nothing, that's the way God made her." "She's sick." "Her brain doesn't work right." "We don't know." and "She has a Mitochondrial Disease."

What many caring, loving, wonderful, meaningful, and just plain curious people do not know or understand about this question is that it is a FLAMING SWORD.

The reason I struggle with my answer so much is because this question (in whatever form it takes) always reminds me of these five things:
1. My daughter is noticeably different than other children. She is not normal.
2. Doctors have not exactly figured out "what is wrong with Megan."
3. Megan's condition continues to worsen over time.
4. She is most likely going to DIE from her condition. And,
5. THERE IS ABSOLUTELY NOTHING I CAN DO TO STOP IT!!!!

So, how I respond to someone depends on how deeply that dagger-of-a-question pierces my heart at the very second when it is asked. I imagine that many parents of special needs children feel similarly about this question. Usually, when I feel that the time and place is appropriate to talk with someone, I am able to help them understand more about Megan and how our family feels and lives with this knowledge. I feel that I am able to give the information here and now, with whomever is reading our thoughts and praying for our family.

With that said, the doctors are "extremely confident" that Megan has a Mitochondrial Disease. Here is some more information from that same website - for those who did not click the link.

"Mitochondrial Disease Fact Sheet
WHAT ARE MITOCHONDRIA?

Mitochondria are often called the ‘cell’s powerhouse.’ They are specialized compartments within almost every cell. They are responsible for producing 90% of the energy needed by our body to sustain life. Mitochondria combine oxygen from the air we breathe with calories from food to produce energy.

WHAT IS MITOCHONDRIAL DISEASE?

Mitochondrial diseases result when there is a defect that reduces the ability of the mitochondria to produce energy. As the mitochondria fails to produce enough energy, the cell will not function properly and if this continues, cell death will eventually follow. Organ systems will begin to fail and the life of the individual is compromised, changed or ended.

Imagine a major city with half its power plants shut down. At least, such conditions would produce a “brown out” with large sections of the city working far below optimum efficiency. Now imagine your body working with one-half of its energy-producing facilities shut down. The brain may be impaired, vision may be dim, muscles may twitch or may be too weak to allow your body to walk or write, your heart may be weakened, and you may not be able to eat and digest your food. This is precisely the situation people with mitochondrial disease find themselves.

Mitochondrial disease can affect any organ of the body and at any age. Symptoms are extremely diverse and often progressive. They include: strokes and seizures, muscle weakness, gastrointestinal disorders, swallowing difficulties, cardiac disease, liver disease, diabetes, blindness and deafness and susceptibility to infections.

WHAT CAUSES MITOCHONDRIAL DISEASE?

For most patients, there is a genetic mutation in either the mitochondrial DNA or the nuclear DNA. The mutation may have been inherited from the mother or from both parents, or it may represent a spontaneous mutation. For most patients with mitochondrial disease, the genetic mutation has not yet been identified.

There are environmental factors, even certain medicines that may interfere with the mitochondria and result in symptoms."

Mitochondrial Diseases are also typed into different categories based on severity and symptoms present. We do not know which type Megan has. None of her testing has shown conclusive evidence to represent her type. However, we do know that, based on her symptoms, she has a severe form that is globally systemic in nature. This has been the puzzling nature of her disease.

We were told that they were going to test for this family of diseases in April of 2003, and we received this diagnosis in June following another very scary and lengthy battle with the same flu virus that she struggled with this April(2009). That flu virus changed her greatly and so did this one. We were told she probably would not survive in 2003 and then again just a couple months ago. Yet, here we are still working hard at trying to give our daughter the highest quality of life she can achieve.

It is for this very reason we have decided to focus on living our lives, keeping Megan as healthy as possible, giving her as many experiences as possible, and making lasting memories rather than chasing the country or the world for ways to "cure" our daughter. We decided to trust that the Lord would reveal information to us if He were to choose that option. For now, we are enjoying our daughter, seeking strength and wisdom from the Lord, and waiting for Him to reveal his ultimate plan for Megan's life as it relates to the rest of our family. We value every moment of her life and have taken every measure to ensure that we have given her every opportunity to have a wonderful life.

Final admission: You can get many other questions answered on the UMDF website linked above depending on how much information you would like to gather. I used to try to gather every morsel of information I could find, but I have to admit that I have not looked at any literature regarding this diagnosis in a very long time. I even "googled" Mitochondrial Disease just now to try to find a way to explain Megan's diagnosis to you.

Next Post- Megan's Symptoms and Our New Schedule