Mitochondrial Disease Awareness Week

[Billingsley99]

Sept 18-24th is Mitochondrial Disease Awareness Week. 

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 15 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.  This week I wear green for MY HERO, MY SON, MY MITO WARRIOR AYDEN!!!!!!!!!! Thank you and GOD BLESS

Awareness-Week-2022-Facts.zip