Continuing to Build Awareness for Mitochondrial….

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About one in 4,000 children in the United States will develop mitochondrial disease by the age of 10 years. One thousand to 4,000 children per year in the United Sates are born with a type of mitochondrial disease. There are no cures for mitochondrial diseases, but treatment can help reduce symptoms, or delay or prevent the progression of the disease. Treatment is individualized for each patient, as doctors specializing in metabolic diseases have found that every child and adult is “biochemically different.” That means that no two people will respond to a particular treatment in a specific way, even if they have the same disease. More information including the facts above can be found here.

This is the frustrating part for those that are affected by this disease. Not only is there no cure, but the treatments vary so much from patient to patient that it’s really a trial and error process which can make things worse before they make them better.

I want to thank everyone who read the last mitochondrial post I did. And I especially want to thank everyone for the prayers and thoughts that they responded with. I also want to thank everyone who forwarded the message to their distribution lists. The only way to get to a cure is to build awareness and so many of you did just that by forwarding my message. I am asking that you please do that again with this message.

And for everyone who has inquired about Megan, I want to share a recent post direct from her carepage. This was posted by her mom, Laura Sheridan and I want to ask that everyone say an extra special prayer not only for Megan, but also for her mommy, daddy and little brother. I cannot imagine what they are going through on a daily basis, but I do know that they could use some extra prayers…..

Today’s appt with Neurology
Posted 2 days ago

I knew the appt would go one of 2 ways. He’d either tell us the change on her MRI was nothing to worry about or he would tell us the complete opposite.

Well unfortunatly, he did not tell us it was nothing to worry about.I knew we were in trouble when he started off drawing a picture of the brain and the cerebellum to show us what part was showing change.He explained to us what is going on with Megan and why we are seeing all of these recent issues.The MRI showed a slight decrease (atrophy) in her cerebellum. All of her most current issues are all from this area…the central apnea, slurred speech, constant tremors, instability with walking, recent seizures.

He then did an exam on Megan while talking to her and did some little tests asking her questions. After which he said he saw the same things that we were mentioning…slurred speech, tremors, weakness mostly on her right side but with an overall decline in weakness, and of course her breathing problems.

He said that the Mitochondrial disease is progressing and that is what showed on her MRI and what is causing all of these symptoms. He did say it could stabilize or get worse…only time will tell where this is going.

All we can do now is up some of her antioxidents to help slow the progression down. We do have an appt with a mito doctor on May 22 and he wants her to run blood work to see what we can tweak. There is no guarantee that this will even help, but this is all we got. Mito has no real treatments.
I asked him about performing another MRI and his response was…why? We might see more atrophy in time and since there is nothing we can really do about it, it would only be upsetting. He said we will just wait to see where this is going and go from there.

I also asked him about the ambulatory EEG he mentioned before and he said that since we have been seeing seizure activity daily we really need to begin medication. He is starting her on Keppra. Even though her seizures are small, he explained that due to her having mitochondrial disease she is at risk for them causing more damamge to her brain.

So, where are we now?I guess we are to take each day at a time, trust God’s plan for her life and her health, and pray pray pray that it stabilizes again.

Trey and I honestly were not super suprised to hear all of this today…we know things have changed and that Megan is a different child. Still this is our worst nightmare coming true in front of our eyes and we feel so helpless. We are her parents and were are the ones that are supposed to protect her and we can’t.

Please continue to keep Megan and mitochondrial disease in your prayers. Not only Megan, but each of these children (and adults) that are facing this devastating illness are at one time or another going to face these type of challenges and there is nothing anyone can do!

No real treatments, no clinic, no Afflac Floor at the hospital, no major government funding or research yet. Yes, we as a family do “Music for Megan”, but that is a drop in the bucket for what these patients need.

I ask all of you to pray BIG for Megan’s health and for the beginnings of hope for these families. Please Pray BIG!!!

As Laura mentioned she plans Music for Megan and this will be the third annual concert. Please plan on attending this event to support Megan and her family.

We are also planning a Mito Night Out at the Brave’s so please watch for additional information to follow on that event and again, plan on attending to support Megan and other mito children.

You can view current updates on Megan on her care page or learn about her journey and Music for Megan on her webpage. Please email this blog posting to everyone you know by clicking here.

Since there is currently no cure for Mitochondrial disease it is EXTREMELY important that we build awareness for this disease and educate people on how they can make a difference. You can even join UMDF as a HOPE member at no charge! I encourage you to do so. I encourage you to take action and make a difference in the lives of children like Megan. To learn more about Mitochondrial; how you can become involved in your local chapter; to join as a member; to make a donation; and for a listing of upcoming fundraising events, please visit UMDF.

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