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My Story

Andrew is our 14 year old son. He has a Complex IV Mitochondrial disease. While there is no treatment or cure, he does much better than Dr's predicted for this age. This page is about the ups and downs of life with a child with a complex IV mitochondrial disease - and the daily struggles and joys that go along with it. Thanks for visiting!

Andrew is our 14 year old son. Although he'd always had some "quirky" health issues, he spent his first 8 years as a healthy child. I thank God that we didn't know then what we know now! We began to notice some changes in Andrew during the winter of 2006-2007, such as him being more forgetful and confused, experiencing horrible headaches, eye tics, and he just seemed to be "sickly". The Dr. ran some tests and told us Andrew was having absence seizures and migraine variant headaches. We were sent on to a pediatric neurologist, who ran all sorts of tests. Lab work sent to Mayo showed a carnitine deficiency. The Dr. explained that this is usually asymptomatic and found on an autopsy!!! Relieved, we immediately started Andrew on the carnitine supplements and assumed he'd get better.

Little did we know that our journey was only beginning. Andrew continued to go downhill and the visits to specialists continued. Andrew was diagnosed with encephalopathy, fatigue, temperature regulation issues, and cognitive regression. By this time, things were being ruled out and we were told this could be a nasty viral infection settled in his brain that takes a year to clear up, or it could possibly be a mitochondrial disease. In an attempt to delay the cognitive regression, the neurologist put Andrew on an Alzheimer's drug.

After finally exhausting all of our resources in the state, we were referred to the Children's Neuromuscular Research Clinic in Ohio. (since this time Riley now has a mito clinic!!) Dr's there agreed with all of the previous Dr's and ordered a muscle biopsy. Although we kind of knew what we were going to hear, it still was hard to learn that Andrew does, in fact, have a mitochondrial disease, along with a secondary carnitine deficiency. The Dr. said it will progress and although it will affect him head to toe, she said he may eventually forget how to button a shirt and could lose memory, hearing, vision, and speech. Please God, don't let it be!

The muscle tissues were sent on to Baylor University for further study. We then also made a trip to see a specialist in Dallas, TX, which gave us more pieces of this medical puzzle. The final diagnosis came in March 2008, a full 13 months into our journey - Andrew has a complex IV mitochondrial disease, with the secondary carnitine deficiency. Basically what we were told in September 2007 was correct, only now we have the fancy name for the specific genetic defect. At this time, there is no treatment, no cure, and not really much research. However, that could change in the future. For now, we treat his symptoms and pray for a slow progression and quick research!! Since his is maternally passed, there's also a chance our younger son Isaac could one day show symptoms. We are praying for dormancy in his cells and that he could lead a full and healthy life.

We've seen progression in Andrew's GI tract and he  has a MACE (ostomy), and even that has failed, so they put in a mickey button which has helped. While we initially took the need for the osotomy pretty hard, our geneticist put things into perspective for us. He said he was surprised Andrew's legs are still strong and thought he'd lose use of them before he lost his GI muscles. So, we decided at this point, his stomach is at least repairable. There is a lot of internal pressure in his stomach, though, and no gurantees the mickey will do what we want it to, but like with everything else, we'll just take it one day at a time. Andrew's cardiologist follows his murmur and a mild leak in his aorta. We were told in the spring of 2012 that his heart had turned sideways. Since the heart is a muscle, the Dr wasn't completely surprised. Right now we just watch and pray for no further progression in his heart. His bladder has had some progression, as well. In 2013 our newest issue seems to be with swallowing. Andrew has a dysphasia diagnosis and we have referrals to a couple new specialists to try to help him. I am hoping there is an easy fix for now because this boy loves to eat!! :)

We have been very blessed by the outpouring of love from our family, friends, and community. We are just making the most of every good day we have and praying for a miracle!

Check the "links" section for more information about mitochondrial disease. Be sure to sign our guestbook and God Bless!

"Life isn't about waiting for the storm to pass...It's about learning to dance in the rain." (unknown)

 

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Carol Maze posted a new journal entry, "Busy couple of weeks...".

Andrew stayed out with a sore throat last Sunday. That always throws him for a loop. Took him to see the Dr Mon when he was feeling worse. I needed him to get well, ... Read more

Linda Meek signed Andrew's Guestbook.

Hey it's your neighbor. Get better - your lawn mower is waiting - it's quite around here. Read more

Mamaw signed Andrew's Guestbook.

So appreciate the updates.  We hear it all in our ears, but until I see it in black and white, it's hard for me to comprehend all that's going on.  Love and hugs. Read more

Carol Maze added a new photo.

Carol Maze posted a new journal entry.

What a long, snowy winter it has been. I am so thankful that Andrew has managed to avoid the germs and has not been hospitalized!! Sleep continues to be an issue and we ... Read more

karen burkley signed Andrew's Guestbook.

A very merry CHRISTmas to each of you and a beautiful and wonder filled new year!!Love, Karen (Jones) Burkley Read more

Carol Maze added a new photo.

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