Billingsley99 Posted September 16, 2019 Report Share Posted September 16, 2019 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 Link to comment Share on other sites More sharing options...
This topic is now archived and is closed to further replies.