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Mitochondrial Awareness Week Sept. 19-25


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It is that time of year again. Help me in trying to raise awareness for those with Mitochondrial Disease. As most of you know my 14 year old son Ayden was diagnosed with Mitochondrial DNA depletion syndrome when he was a little over 2 years old. At that point he had been searching for an answer for close to 18 months on what was going on with his body. We were told to enjoy each day and that he would not make it to 3 years old. The Dr at the Cleveland Clinic told us that he would start to lose his sight and hearing, then use of his arms and legs that his body would shut down anything not needed for survival. His organs would begin to shut down and he would go to sleep and just not wake up one day. On January 11 2010 we were given a death sentence but by GODS grace and a miracle Ayden is here and doing amazing things. We are entering a new chapter in his life and one with much uncertainty. When kids with Mitochondrial disease hit puberty and hormones take over some crazy things can happen. Many at that age end up being in wheel chairs or needed some type of assistance for mobility. I want to thank GOD and all of HSN for all the prayers over the years, and for the platform that you have allowed me to share these things.

 

I just read something that really gave a great analogy to  what people with Mitochondrial Disease go through on a daily basis. It says that it is like having your smart phone battery getting really low. Some of the apps work fine but some slow down, don't function properly or at all.  The Mitochondrial of the cell is what give the cell power and these Mito warriors have issues with that. For Ayden it is usually fatigue, low muscle tone, constant body aches, and low immunity.  Please help me to make more people aware Of Mitochondrial Awareness. Please feel free to take a look at https://www.umdf.org/mitochondrial-disease-awareness-week-2021/  to more about this terrible disease.  This week I wear green for MY HERO, MY SON, MY MITO WARRIOR AYDEN!!!!!!!!!! Thank you and GOD BLESS

 

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Edited by Billingsley99
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I thought that this was really cool. I dropped the ball this year on my project but next year I am going to go local business  around Indy and try to get them to light up for Mito by putting in green bulbs during Mito Disease Awareness. Here are some cool photos of monuments around the world that light up green for Mito. Something easy that you can do and when people ask why your porch light is green you can share some info. Thank you all and take a look!!!

 

https://mitochondrialdiseaseweek.org/events/light-up-for-mito/

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Fact-6-01-300x125.png

 

At 1 point Ayden was seeing 12 different specialist. He now sees 9.

-Hematologist

-GI

-Neurologist

-Dental

-Mito Specialist

-ENT

-Heptologist

-Endocrinologist

-Orthopedic Surgeon

Each are seen multiple times a year. As well many are seen when things just happen as well. You can imagine how much school is missed just to Dr apts and not feeling well. Kids with Mito issues have lots of obstacles and some include being in school and making good grades. We are truly blessed Ayden is a straight A student minus art, he gets that from his Dad.

 

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3 minutes ago, IUFLA said:

The straight As, or the art deficiency? ;) 

I don't think my wife gets on here so I will so both, just kidding its the Art thing for sure. My wife is very creative and artistic for sure. Me I can't draw a straight line with a ruler. Keeping on topic the fact that Ayden struggles with fine motor skills really does hamper his ability hopefully he can do enough to get a B-

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12 minutes ago, Billingsley99 said:

A story about a family in Ohio that goes to the Cleveland Clinic. One of the best hospitals in the world in regards to Mitochondrial Disease. the hospital that diagnosed Ayden 11 years ago!!

 

https://my.clevelandclinic.org/patient-stories/16-a-family-fighting-for-each-day

 

I was actually reading their site about the causes, diagnosis, and treatment...

I can only imagine how difficult it is for your whole family, but you have a true blessing with Ayden...He sounds like just a wonderful kid...I think he'll go on to do great things!

Edited by IUFLA
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I do not post any videos or information in an attempt to get people to donate to any cause. I post so that I can help educate others and for someone that maybe is seeing some of these signs in a loved one can help them to get the care they needed. Many kids especially die before getting the diagnosis and an attempt to get some help. I also post so that you can see why kids like these inspire me and encourage me and also to see what many go through on a daily basis. For over 30 years I looked at life through a certain lens and after Ayden was born and diagnosed it changed drastically. I have been on both the Mountain top and in the valley , I have felt the warmth and light as well as the cold darkness associated with having a child with significant health issues. As you watch any of these videos I hope that it inspires you to live each day to its fullest and never overlook the small blessings. LIke I have said so many times in this forum i post about some things that are so trivial to most but for us its a BIG deal!! 

 

 

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My last post of the day. I Just had to make up from not posting on the weekend. A story of Eliie McGinns and her family from 2013 and an article from last year updating their fight to help find a cure. Inspiring!!

 

 

https://www.arlnow.com/2021/03/08/arlington-family-raises-400k-to-research-cure-for-daughters-disease/

 

Edited by Billingsley99
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It hard to believe that in 2021 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!! Outside of an accident patients that have been diagnosed with Mitochondrial Disease know that it WILL TAKE THEIR LIFE

 

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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