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Thursday, June 4, 2009

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

6 comments:

Anonymous said...

My Sweet Daughter,
Thank you for sharing your thoughts and your heart with us concerning Megan. You do need to think about this: You and K work diligently every day taking good care of Meg and giving her the best quality of life possible - and you have been doing so for nine years. My heart breaks for you guys when I think of all you are going through and will go through. Just know that my heart breaks seeing yours broken. I will always be here for you. I love you and will support you guys with all my being.
Mom

Cindy McNeal said...

I have just stumbled upon your blog. I will pray for your precious Megan. I can't imagine what you must be going through. All of these story's I hear about and get addicted to following, are so far away from me. We are here in Colorado, and I continue to wish that I would live closer to the people who post these amazing, life touching blogs so that I may just pray over them or even just hug them. I couldn't imagine how it must feel to feel like you have to explain your daughters condition to people. It bothers me that people ask. If I see a child in any condition that is not as "we" call "normal", I just say a silent prayer in my head for them and their families. It does not matter what is "wrong" with any of them. God made them. God has a story written for them. I am so so so proud of you and other mothers in your situation. My nightly prayers will include your beautiful daughters name, and the rest of your family. Bless you all!

Amber Bush said...

I also just came upon your blog. We too have a special needs daughter this post sounds soooo familiar to us. Sometimes you just get so sick of explaining to everyone why your little angel isn't "normal." And in our experience, little children are so innocent and curious, but it is the adults that can be so rude. We will start praying for your little Megan.

www.caringbridge.com/visit/oliviabush

Anonymous said...

Thank you for posting this very honest and difficult enry. I have adult-onset mito disease, also undetermined as to it's exact nature. I am declining rapidly and without explanation for an adult-onset patient. My heart and prayers and understanding are with you as you face this Great Mystery and live with the threat of death looming in every germ your child encounters. I am fortunate my children are grown, though there is the possibility my youngest has inherited my illness: she started having seizures in middle school, but so far no actual signs of mito disease. But I worry. I take my own worries about myself and what my early passing will do to my family and I try to multiply it by the infinite and undefinable number you would have to use to explain the worry you feel for a child. All blessings on you as you live a wonferful life together for as long as you can. Personally, I have come to the conclusion that first you have to do what you have to do to prepare for death, which for a child is very little (I have many relationships to heal, things to put in order, lessons to teach my children, things to tell my husband, etc), then you pursue health as well as you can without letting it take over your life, and then you live as though you are going to live: I applaud your decision to give Megan as full a life and as many wonderful experiences as possible while she is well enough to participate. May God spare her the ultimate price, I pray, but He may not and we will never know why. In the meantime, you chose Life. I call it the "falcon phenomenon." Last week I was sent home by my neurologist for good. He can't help me anymore because I can't take the antiseizure meds I need. This was quite a blow, as you can imagine, to be given up on by a doctor I trusted for several years. But on the way home, standing still for me for several minutes, on the ground in the suburbs, where they simply do not ever appear, was a peregrine falcon. When I was growing up they were endangered by DDT. Today they are making a comeback by nesting in skyscrapers and living off pigeons. I have only seen one before in my life, back when they were truly rare. This fellow must have been at the edge of his feeding grounds in the close suburbs. He stood quite still for me wonder at, then, when we drove away--he followed the car for about a mile, landing from tree to tree. again, most un-falconlike behavior. My day was saved; one thing taken, another given, because I took the time to be open to awe and did not dwell on my illness. The neurologist is forgiven, though I have not recovered from the shock. From now on I will name these little gifts "falcons," and treasure them wih whatever time I have left. May you, Megan and all your family find many falcons, if not a cure, in the times ahead. God bless you.
Anonymous

Holly said...

I'm glad you posted about this. I've known several moms of children with mito disease but they were younger than Megan and unfortunately they have also went to Heaven. I'm sorry for your loss.

Jill said...

I have MELAS, I see Dr. David Perlmutter in Naples , florida..I have been on IV glutathione and have remarable improvement, also there are studies being done at the University of Florida proving DCA is very affective in mitachondrial disease. Please check these out. I am living because I prayed and searched for help. Also signficant amounts of Co enzyme Q10 are an absolute necessatiy for mitachondrial disease. My prayers are with you.