Jump to content

OT: Mitochondrial Awareness Week


Recommended Posts

First and foremost I want to thank GOD for allowing me to be the father of such an amazing little boy.  I am truly blessed beyond on my wildest dreams. I want to say a special thank you to Colonial Crester and Mile as well as the MOD team for allowing me each year to post about Mitochondrial Awareness Week. I know that some for whatever reason oppose it but these men and many others fought so that I can share info with you. Thank YOU!!!

Most of you know that my son Ayden suffers from Mitochondrial Disease and he was officially diagnosed Jan 11, 2010 after 18 months of trying to find out what was going on in his body. He was diagnosed at the Cleveland Clinic and the prognosis was terrible. We were told that he would not live to see his 3rd birthday. 2 weeks ago we celebrated his 12th birthday. This terrible disease has taken us on a course that we never could have imagined but through it all God has taken care of us and Ayden has never ever let it show. For the most part with Ayden things have been good he still struggles with many things that most kids his age don't but all and all he is in a good place. We are getting to the time of uncertainty with his disease. The early teen age years and the sudden change in hormones can play havoc on those with Mito issues.  Please continue to keep him in prayer. We don't have any idea how these things will affect him. this is the age in which this disease can cripple a person, rob them of their sight, hearing or basic functioning. Even thought Ayden looks like all is well there are things going on inside his body and even for us it is something that we kind of forget about . 

Several years ago Mile made Ayden the official Mascot of HSN!!  This place has been more than just a message board for me. IT was a place I could escape to when I needed to. It was a source of therapy and a place full of people that loved our HOOSIERS as much as I do. I took comfort in coming here and I am blessed to be part of such a great community. 

Over the course of this week I will be posting videos and info about Mitochondrial Disease. Many of which are inspirational. These true Mito Warriors are heroes to many and like I have said many time. Ayden is my HERO!!!

If you want to learn more about this terrible disease please visit the https://www.umdf.org/

If you have nothing better to do I have linked a blog that we created many years ago and for along time I updated it and it was therapy for a father that was hurting , that did not know how to deal with some of the feeling and darkness I was feeling. Through it I found out I was helping many others as much as it was me and really helped me get through some tough times.  if you want take a look and learn a little more about my little boy.

http://aydenbillingsley.weebly.com

Much more to follow throughout the day and this week. Thank you and help our family spread the word on Mitochondrial Awareness Week Sept. 16-22

image.jpeg.88d5d689a1045e15240b970f9e2f9e5f.jpegimage.jpeg.1bb7ba729cf9b72ada7e2afc33bf700f.jpeg

Link to comment
Share on other sites

One of my favorite highlights. Was when the then current mods of HSN contacted Indiana University in order to obtain tickets to an IUBB game, for you, Ayden and your family. We were told they appreciated our effort, however were not able to grant our request.  However, and to this day, I have no idea how it happened. But Coach Crean got wind of our request, and managed to get tickets for Ayden. 

It's been a long journey. Just know that Hoosiers Sports Nation will always be on that journey with you and Ayden.

Link to comment
Share on other sites

6 minutes ago, milehiiu said:

One of my favorite highlights. Was when the then current mods of HSN contacted Indiana University in order to obtain tickets to an IUBB game, for you, Ayden and your family. We were told they appreciated our effort, however were not able to grant our request.  However, and to this day, I have no idea how it happened. But Coach Crean got wind of our request, and managed to get tickets for Ayden. 

It's been a long journey. Just know that Hoosiers Sports Nation will always be on that journey with you and Ayden.

I received a text from Coach Crean about 1 year ago asking how Ayden was doing and how my oldest son was doing in college. Thanks Mile for that trip down memory lane. just 1 example of what makes this place unique!!

Pics from Ayden's 1st day and 1 in his first set of clothes to one last week on the golf course.

2586318.jpg

2552355.jpg

imagejpeg_0001002003004005006007008.jpg

Link to comment
Share on other sites

42 minutes ago, Billingsley99 said:

Jack Black shares some info on mito. Jack's sister was diagnosed with a mitochondrial disorder 

 

 

I'm sure you knew this, but for everyone else, former MLB player and current manager of the Twins Rocco Baldelli also suffers from a form of mitochondrial disease. (In all likelihood, it's what cut his playing career short).

Link to comment
Share on other sites

1 hour ago, Zlinedavid said:

I'm sure you knew this, but for everyone else, former MLB player and current manager of the Twins Rocco Baldelli also suffers from a form of mitochondrial disease. (In all likelihood, it's what cut his playing career short).

Glad you brought that up. On Aydens make w wish trip before we left Florida to head to Atlanta to have a.muscle biopsy we were the guests of Rocco to see the Ray's play. Unfortunately that day he was optioned to AAA and we did get to see Garza throw a no hitter

 Rocco is the only professional athlete that we know of the suffers from mitochondrial disease.  Wish we could have met him. Joe Maddon and Jim Leyland spent some time with us and my older son got to throw with Miguel Cabrera 

Link to comment
Share on other sites

On 9/16/2019 at 1:03 PM, Billingsley99 said:

I received a text from Coach Crean about 1 year ago asking how Ayden was doing and how my oldest son was doing in college. Thanks Mile for that trip down memory lane. just 1 example of what makes this place unique!!

Class move by Coach Crean.  It seems like a lot of people can't get beyond what they see as his faults, but there is a lot of good in the man as well.  

Link to comment
Share on other sites

1 hour ago, Billingsley99 said:

Cannot argue that.  We are going to try to meet up and catch a practice when we go to Atlanta for Ayds dr appointment. 

Cool.  Really cool if you can make it happen.  That would be really neat.

Not the normal time of the season. In Colorado, we have gotten through the Palisades peach season. Really good.  Bought boxes.  And have frozen peaches for the winter.  However, nothing beats a Georgia peach.  Grab some, if you can. 

Link to comment
Share on other sites

10 hours ago, milehiiu said:

Cool.  Really cool if you can make it happen.  That would be really neat.

Not the normal time of the season. In Colorado, we have gotten through the Palisades peach season. Really good.  Bought boxes.  And have frozen peaches for the winter.  However, nothing beats a Georgia peach.  Grab some, if you can. 

Mile you will like this. In the Spring we went to Florida to watch my son play baseball. On the way back Ayden wanted something from each state we drove through that's is significant to that state. Of course some Georgia peaches came home but when we got to Kentucky I told him he was too young for Bourbon and I don't want horse poop in the car,  his response " this place sucks let's just get home" Even the 11 year old understood it!!

Link to comment
Share on other sites

Since Mito disease affects 3 or more body systems most patients see multiple specialists . Here is a list of the specialist Ayden sees on a regular basis. 

Pulmonologist 

Endocrinologist

Gastro Intestinal 

2 Neurologist 

Orthopedic surgeon 

Genetics Specialist 

Mito Dr

Nutritionalist

He also has to see an eye and hearing specialist every 3 months. He is one of the lucky ones. Many Mito patients have feeding tubes and require oxygen.  Please help us raise awareness and find a cure. Thank you and GOD BLESS

 

1568892270503948708462451791887_1629549860521.jpg

Link to comment
Share on other sites

Archived

This topic is now archived and is closed to further replies.

×
×
  • Create New...