Another mom of older kiddos with Mitochondrial Disease used an interview format to share thoughts on her family's life with Mito to increase awareness this week. I hope she doesn't mind me stealing her neat format and sharing my thoughts in the same way.
21 Questions: An Interview About Mitochondrial Disease and Your Family
1. What type of Mitochondrial Disease does your child (children) have?
Our son had Mitochondrial DNA Depletion Syndrome, and his doctors suspect his oldest sister has it as well.
2. When was it diagnosed?
June 2010
3. At what age were symptoms first noticed?
At 12 months, we knew something was up but had never heard of Mitochondrial Disease, or Mito. Looking back to before that age, there were some soft, innocent-seeming signs much earlier.
4. What is the biggest adjustment your family has had to make?
Learning to do things as a partial family has been the hardest......having to leave Garrett behind while the other four of us do activities is certainly not how we envisioned life as a close family.
5. What Mito gene does your family have?
We do not know yet, but more and more gene tests are leading to new ways for us to learn that, hopefully soon.
6. How do you explain Mito to someone who inquires?
Mitochondria are the power plants in every cell of your body except red blood cells. When there is a problem in the power plant of a cell, an energy deficit results. In our son's case, his brain, skeletal muscles and GI tract are affected. The range of severity is different in every person, ranging from not obvious to profoundly and severely affected. There is no cure, and most types of Mito are progressive.
7. What assumptions do people make about your child?
"Oh, he is so busy! He doesn't look sick! He certainly doesn't lack ENERGY from the way he is active!" Totally wrong. His random, unorganized use of energy is merely is brain's way of misusing the little he has to an extremeand further depleting the little bit of energy he has. And the "sick" you cannot see is because you cannot see his mtDNA depleting lower and lower and his mitochondria functioning incorrectly.
8. What is the hardest part of each day?
It depends. Sometimes it is the many, many times of each day where dealing with behavioral issues seems like a task we can no longer handle. It feels hopeless often. Other days it is looking at Garrett while he has his shirt off, realizing how wasted and little he is. Then others it is at night, after I go to bed and before I begin to pray, when my mind replays his Mito specialist telling us he has a progressive, incurable disease. For Garrett, the hardest part of the day is taking his "yucky medicine!!!!"
9. How many doses of meds does your child take daily?
16-20 depending on his daily GI status
10. What Mito-related support organizations do you support and/or use?
United Mitochondrial Disease Foundation, MitoAction, and the Muscular Dystrophy Association
11. How does Mito affect your child's education?
Because of the effects it has on Garrett's brain, he is functioning as a 2.8 year old to a 3.2 year old when he is now six years old. He is ADHD, on the Autism spectrum, has sensory processing problems, and anxiety.Thus he was in a special needs preschool for two years and now attends a special day class program in a public elementary school where aides take him to some kindergarten activities as he can handle them. School is 5 mornings per week and drains him many days. But he LOVES school!!! We currently do not know what to expect as far as his future for his learning.
12. What would people be surprised to know?
Maybe it would be surprising to know the roller coaster this has been. One moment we can be in the pit wrestling with words like "progressive, life-shortening, usually fatal," but in the next moment we can read a letter, a comment here, or have a hug from a member of our church, neighborhood, or family and realize how blessed we are. Most of all, the blessings have outweighed the curses a million times over.
13. What is the hardest thing to accept about Mito?
That this disease can kill our child anytime and there is no cure and no protocol for how things will go and how to treat them. The helplessness.
14. What is your opinion of Mito awareness to date?
It is astounding to think that this is as common a disease as childhood cancer, yet 99.9% of the people we come in contact with have never heard of it. We have lots of work to do!!
15. What is something you feel your family misses because of Mito?
We miss what we envisioned for our family: closeness, completeness and an active lifestyle including showing ALL of our three kiddos the world. We truly feel the gaping hole where Garrett is missing when we have to leave him behind. We also have had to grieve the loss of what we thought would be a normal, healthy child and face the cold, hard possibilities of future decisions.
16. What has Mito taught you?
Sounds cliche these days, but we have to take note of the wonder of this life each second and not waste time in selfishness and worry. People who do not even know you can end up being your best supporters and cheerleaders and comrades through sharing this Mito experience through the internet. It has also taught us to look for the good in everyone. AND NEVER, NEVER judge on snapshots you see of others' lives!!!
17. Please tell us a secret! What do people say that gets under your skin the most, but you could ` never tell them about face to face?
There are two things. One is the oh so common "wow, he looks like he is doing so WELL!!!" I know they mean well, but they have no idea what this is like when they aren't seeing the snapshot. Second, it's not really under my skin, but it gives credit where credit is NOT due: "You guys are so amazing to handle this situation with Garrett. How do you do it?" Honestly, we do nothing special whatsoever that you would not do if Mito lived in your life. We have no choice. We don't choose this, and in our shoes, you would do the same. You could handle it probably better than we do!!!
18. What is your favorite thought, quote, or scripture that keeps you going in dark times?
Wow, the entire Bible is full of scripture that moves and motivates me, but when all else fails, I think of eternity and how we are on a little field trip here on Earth. Someday we will be together in perfect bodies, and I cannot wait to talk to and play with and get to know Garrett again then. This is but a blink of an eye. Wow.
19. When someone's child is diagnosed with Mito, what would you like to tell them?
Find support through others walking the same path. Mito parents are simply amazing. There are numerous online message boards, local support meetings and camps. Get plugged in, get mad and raise awareness and research money, and carry on!!!! And science is moving rapidly in the direction of Mito as funding increases and so does awareness. Above all else, lean on God and He will sustain you!!! And call me......I promise I can make you laugh!
20. What is something that surprised you about Mito?
I am most surprised to learn how differently even siblings with the same exact gene affected can have such a varied expression of the disease. I am also astounded to know that one out of ever 3000 children will develop Mito by age 10. And that number is increasing as research pinpoints more types.
21. Anything else you would like to share?
THANK YOU for reading this. Please spread the news about Mito. Your prayers and support are felt and seen. We appreciate you!!!!
Godspeed,
Clara-Leigh
Thanks for sharing your interview. I can so relate to "One is the oh so common "wow, he looks like he is doing so WELL!!!" I know they mean well, but they have no idea what this is like when they aren't seeing the snapshot" IT DRIVES ME CRAZY!!!!
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