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Andrew’s Story

Andrew is our 17 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 17year 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)


Latest Journal Update

Long time, no update....

So, I guess that means things have been going relatively smooth. He does continue to have good days and bad days. On a good day, you'd never know. On a bad day, you might be surprised. It might also mean that I'm overwhelmed between Court's diagnosis last year of early onset parkinson's and keeping Andrew looking so good with all the meds (around 42 per day), twice monthly Riley trips, and all that goes on behind the scenes. However, he has done pretty well. His right arm that wouldn't raise from Oct to May was fixed in late May. There was a small tumor that interventional radiology tried to biopsy. They weren't able to collect a sample and couldn't promise us it won't grow back. but getting the fluid out was enough to return his arm mobility! The pic was taken shortly after he realized his arm raised again. You can see the pure joy because after seeing several Dr's over several months and lots of PT, we were basically told it was a mito problem. So, needless to say we were all so excited!!

We were blessed to go to the UMDF mito conference in Washington, DC this past summer. We learned a lot and connected with many families. I got to present with a well known mito Dr that I'd always wanted to meet. That was pretty cool! We made it our vacation and took a couple days to tour before the conference. 

Andrew enjoyed another year of MDA camp at Bradford Woods and also enjoyed going to 2 church camps. He also mowed some lawns and just enjoyed his summer. We are trying to let him be a normal teen as much as we can, but we still have to hound him about taking his meds 4 times a day and doing his flush each night. Apparently, all the cool kids aren't doing those things. :)

Andrew is a junior this year and Isaac is a 7th grader, which means they are at the same school. I'm pretty sure Isaac keeps things pretty interesting and is making his presence well known.....haha!

Other than some bad mito days here and there, things have been pretty easy lately. However, Andrew did have a "neuro event" in Sept. We followed up with neurology last week at Riley and he was very concerned. Andrew had gone to the garage to get some milk out of the fridge but was gone a long time. I went to check on him and he had opened the door to get some air and was nauseous. He said his jaw went numb and his tongue kept rolling back in his throat. He was alert for the whole thing and it was less than a minute. Neuro said because he is driving we must do a sleep deprived EEG asap. If there is seizure activity picked up, or even too many focal spikes, we will have to have a conversation about driving. Last spring, his EEG was clear and he was given the go-ahead to get his license. I am praying that what happened in Sept was a freak thing and nothing shows up. We are to keep him up all night Monday (11/2) and then EEG is at 1:00 that Tuesday. He has a GI appt that day before the testing, so that might be a long day, long drive up keeping him awake, etc. Praying I am full of patience that day because I will have a grumpy teenager to keep awake. 

There is a Drew's Crew page on Facebook that I update more, although I will never completely stop this journal. There is a video of Andrew singing at the recent fall concert at school on that page. Two days prior, he was at the Dr and just really off. Strong meds for a bacterial infection kicked in and he was able to sing with his good friend. 

Until next time.....thanks for all who continue to pray for Andrew and our family. Your prayers are felt and our faith is the reason there is calm in every storm. Even when Dr's didn't give us much hope for Andrew, Courtney said he knew God had other plans. So until we hear otherwise, we are just gonna keep loving life and thanking God for each day!