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OT: Mitochondrial Awareness Week


Billingsley99
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Thank you to the board and to the Mods for allowing me to post this each year.

Sept 16-22 is MITOCHONDRIAL DISEASE AWARENESS WEEK!!!

As many of you know my 11 year old son Ayden suffers from Mitochondrial Disease. He was diagnosed at the Cleveland Clinic in 2010 and we were told that he would not live to see his 3rd birthday.  We serve an amazing GOD that has has given us many more days that what we thought we would have this little boy for.  He is my hero he is my inspiration and he is the 1 person that makes me try to be the best person that i can be.  This week I honor him by wearing green in support of Mitochondrial Disease Awareness. 

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Mitochondrial Disease affects each person differently and 2 people with the exact same mutation may not have any similarities in their conditions. Many kids with this disease either never walk or when they begin hitting puberty the change in hormones has a terrible impact on their cells any many end up in wheelchairs. As of today Ayden is doing wonderful and continues to improve each day. Just like all kids he has his struggles and many are with things that others find as routine. I am truly blessed to have that little boy in my life and he brings a sense of peace and light to a world that can be very dark at times.  Thank you to HSN for allowing me to share and for this group of Hoosier fans that are more than just a sounding board. I have shared many stories, tears and celebrations with many of you over the years. Thank you and God Bless!!

 

During this week I will be sharing info and facts and stories of inspiration of those with this terrible disease. Thank you for taking the time to care about my little boy and those afflicted with this incurable disease.

 

 

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1 hour ago, Billingsley99 said:

 

https://www.ajc.com/sports/baseball/son-braves-wren-battles-genetic-disease/72IgpZksNdXor24M4SgthM/

Dr. Shoffner is also Ayden's DR. At least he was, he is now working fulltime in research to help find a cure!!

Son of Braves GM Wren battles genetic disease

Thank you for sharing this, and I’ll be thinking of you, your family, and your son this week. And donating to this research! I look forward to your future posts about this. My best to all of you.

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Since mitochondrial diseases are incurable, no treatments can be given to these patients.

MITO MYTH

Even though these disorders are long term and incurable, treatments are available. Early treatment of symptoms can reduce symptoms or slow the decline in health. Avoiding certain medications and medical stressors that worsen symptoms is also helpful. Certain medications and supplements may improve mitochondrial disease-related symptoms.

Website Banner_1_1537294304808.png

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Today i wanted to start off by sharing some of the things Ayden goes through on a daily basis.

I am so blessed and thankful for him. I know that others endure far worse but when it's your own child it is just unexplainable. 

Some of the symptoms Ayden faces. Fatigue,muscle pain and cramps,low muscle tone, respiratory issues,small stature,no appetite,chronic sickness,weak immune system, prone to pneumonia and the common cold has him down for days. He runs high fevers when he is sick.

Most days we carry him out of bed because his legs hurt so bad and are stiff. We massage them while he does breathing treatments. We force him to eat because he does not feel hunger.  He takes Carnatine and COQ 10 medicinal supplements. A full day of school wears him out but he never lets it stop him. He currently plays baseball and is beginning karate. We recently decided to give up basketball due to the difficulty with recovery. He is picking up golf instead. He is a straight A student Treasurer of student council and my hero. I love him more than anything in this world and thank you for allowing me to tell you about MY MITO WARRIOR!!

 

 

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More issues that people suffering from Mito  may go through. 

Heat and cold exposure.  Ayden cant go outside for recess or to play or do sports if temp is 85 or higher or below 40. 

Anything that causes stress on the body can cause sickness, damage that is unrepairable or even death.

The normal everyday things in life that many of us do without thinking or take for granted are chores for Mito patients.

When Ayden was 1st diagnosed we were told he would lose sight hearing and use of his arms and legs. The body would shut those things down to conserve energy for his core organs. Then organs would start shutting down and one day he would go to sleep and not wake up. Every parents worse nightmare.

Thank you HSN for allowing me to share our story as well as others. This forum has been a great source of therapy for a father of a sick child that needs the forum more than it needs me. You have helped keep me sane over the years. I love this place!

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12 minutes ago, Billingsley99 said:

More issues that people suffering from Mito  may go through. 

Heat and cold exposure.  Ayden cant go outside for recess or to play or do sports if temp is 85 or higher or below 40. 

Anything that causes stress on the body can cause sickness, damage that is unrepairable or even death.

The normal everyday things in life that many of us do without thinking or take for granted are chores for Mito patients.

When Ayden was 1st diagnosed we were told he would lose sight hearing and use of his arms and legs. The body would shut those things down to conserve energy for his core organs. Then organs would start shutting down and one day he would go to sleep and not wake up. Every parents worse nightmare.

Thank you HSN for allowing me to share our story as well as others. This forum has been a great source of therapy for a father of a sick child that needs the forum more than it needs me. You have helped keep me sane over the years. I love this place!

And that brought a tear to my eye.  Just keep doing what you are doing my friend.

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It hard to believe that in 2018 that there is no cure and very little that can be done. Everything that doctors suggest is to slow down the affects of the disease, and to provide the best life possible under the circumstances. As a parent that is very disheartening. With the particular disease that Ayden was diagnosed with we were told that something as simple as the common cold could begin the breaking down of his DNA and that there is nothing that can stop it. For many patients unfortunately it is not if it will take their life, its when. Once again thank you for all your support and for letting me share our small piece of this terrible disease. Thank you and GOD Bless!!

 

How is Mitochondrial Disease Treated?

The goal is to improve symptoms and slow progression of the disease.

  • Use vitamin therapy
  • Conserve energy
  • Pace activities
  • Maintain an ambient environmental temperature
  • Avoid exposure to illness
  • Ensure adequate nutrition and hydration
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I want to thank HSN and the mod team for giving me the opportunity to share some personal information and to take about a disease the many have never heard of. Thank you to all that have read,shared, commented, and learned more about Mitochondrial diseases. Thank you for the support and for caring for my little Mito WARRIOR. We take this 1 week to raise awareness but those with this incurable disease live it all day everyday.  Thank you and God Bless

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