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OT: Mitochondrial Awareness Week


Billingsley99
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Today Kicks off National Mitochondrial Awareness Week.  Most are completely unaware of this disease as was I until Jan 10, 2010 when the doctors at the Cleveland Clinic informed us that Ayden,  my youngest son, had a Mitochondrial disease known as DNA Depletion Syndrome and he would not live to see 3.  I am one to carry my faith on my sleeve and I know that God put his healing hands on Ayden, as we just celebrated his 10th birthday.  I am asking that you take some time this week to just learn a little maybe visit the UMDF.org website.  Or visit Ayden's old page at [email protected] to find out more about this terrible disease.  If you can share with someone.

 

Interesting facts.

Every 30 minutes a child in the US is born with Mito

More kids die each year to MIto DIsease than to childhood Cancer.

50% diagnosed lose the ability to walk by teenage years.

Many lose sight, hearing and use of limbs.

 

This is a terrible terrible disease and please help me spread awareness.Thank you for allowing me to use this forum to spread Awareness.  I will post daily some info on Mito if the MODS allow.  Thanks.  This week I wear GREEN for my HERO AYDEN!!!!

HOPE. ENERGY. LIFE

Shane

 

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Prayers go out to Ayden, you, the whole family, and every child that has the disease.

The stat you posted comparing Mito Disease to childhood cancer hits home with me.  My daughter is a childhood cancer survivor, so I know first-hand with the struggles of dealing with that disease.  I would have never guessed that Mito was that prevalent.  

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2 hours ago, 5fouls said:

Prayers go out to Ayden, you, the whole family, and every child that has the disease.

The stat you posted comparing Mito Disease to childhood cancer hits home with me.  My daughter is a childhood cancer survivor, so I know first-hand with the struggles of dealing with that disease.  I would have never guessed that Mito was that prevalent.  

My heart goes out to your daughter and your family.  She must be one tough little girl.  As parents would would ever imagine that our HEROES would not be the ones wearing the uniforms of our favorite teams but instead those that live in our house and fight every day and show us what truly matters.  Thank  you for sharing and You daughter and your family will be in my prayers.  

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Just now, Billingsley99 said:

My heart goes out to your daughter and your family.  She must be one tough little girl.  As parents would would ever imagine that our HEROES would not be the ones wearing the uniforms of our favorite teams but instead those that live in our house and fight every day and show us what truly matters.  Thank  you for sharing and You daughter and your family will be in my prayers.  

She was 3 when she was diagnosed.  Surgery to remove the tumor and part of her kidney.  Several months of chemo.  She's 11 now, in 6th grade, and plays about every sport she can find time for.  

We were very fortunate it was discovered early, and it was somewhat of a fluke that it was.  

And, you are correct about your assessment of heroes.  She was 10x tougher than I was during that time.  

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Todays Mito Fact

 

Most Mitochondrial disease are inherited from the Mother. (This one really really hurt my wife, thinking that she was to blame) Testing proved that Ayden's was spontaneous mutation.

There are millions of people that are carriers to Mitochondrial Disease

It is a spectrum disorder, ranging from Mild to severe

No one knows when a person will take a turn for the worse and what might trigger it.  Things such as a simple cold can lead to life threatening situations.

The best way to get a diagnosis is through a muscle biopsy of the quad muscle. I believe that Atlanta is the only place in the US to get a natural fresh sample tested..  That is where Ayden's doctors are located.

 

Once again thank you all for allowing me the platform to try and raise awareness.  As a favor to me give those little ones of yours  just an extra squeeze and hold it just a little longer than usual.

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15 minutes ago, 5fouls said:

She was 3 when she was diagnosed.  Surgery to remove the tumor and part of her kidney.  Several months of chemo.  She's 11 now, in 6th grade, and plays about every sport she can find time for.  

We were very fortunate it was discovered early, and it was somewhat of a fluke that it was.  

And, you are correct about your assessment of heroes.  She was 10x tougher than I was during that time.  

What a brave little girl.   Thank you for sharing.  I am hoping that golf is a sport that Ayden will be able to do. We tried archery but was just not strong enough and was cut.  He plays basketball and baseball because Dad is the coach and we are at the age where there are no cuts.  He has the skill just not the strength and energy.  

Edited by Billingsley99
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I just lost my one year old niece to this disease.  Both parents are carriers.  They have two older boys who need to get tested.  I believe they did dna testing of the blood at Baylor.  I remember hearing your story on one of the other message boards, but this is definitely a disease that is not well known!  Prayers to you and your family.

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@Billingsley99 and @5fouls - I can't even find the words to express the emotions I'm getting reading both of your kids stories. You have survived my worst fear as a father. The strength and determination your sweet little ones must have, and the amazing support you and your families gave them, is amazing. 

I know I will be hugging my toddler a little tighter when I get home to see her. 

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9 hours ago, Ryno6284 said:

I just lost my one year old niece to this disease.  Both parents are carriers.  They have two older boys who need to get tested.  I believe they did dna testing of the blood at Baylor.  I remember hearing your story on one of the other message boards, but this is definitely a disease that is not well known!  Prayers to you and your family.

So sorry for your loss! Childhood disease is a hideous, trecherous thing. 

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12 hours ago, Ryno6284 said:

I just lost my one year old niece to this disease.  Both parents are carriers.  They have two older boys who need to get tested.  I believe they did dna testing of the blood at Baylor.  I remember hearing your story on one of the other message boards, but this is definitely a disease that is not well known!  Prayers to you and your family.

I cant even begin to imagine that pain.  We are truly blesses and Ayden keeps it all in perspective for me.  You will never see that little boy without a smile on his face.  Thank you for sharing that painful story and helping raise awareness for this terrible disease.  I will keep your family in prayer

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Todays Facts

Mitochondrial Disease can show up in a person of any age.

Linked to other diseases such as ALS, Parkinson's, and certain Cancers

Commons issues include brain,muscle,heart,liver,eyes,ears,and kidneys.

2 people with the exact same mutation might have completly different issues

Many of the people with Mito have bodies that operate with energy levels at about 10 percent of most people

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