Mito Awarness Week + Big News!

Yay! 
I have internet! 

Just in time too! 
Its Mito Awareness week!
Many of you are familiar with my story, some of you, who are new, might not be.
I lost two children - Lane( age 2) and Averie (age 7) to mitochondrial disease called Alpers- one of THE most deadly mito diseases out there. I carry a mutation and my ex-husband also carried a mutation that when combined resulted in Alpers- very rare, but always fatal.

What is Mitochondrial Disease?
(from UMDF.org)
"Mitochondrial diseases result from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. Mitochondria are responsible for creating more than 90% of the energy needed by the body to sustain life and support growth. When they fail, less and less energy is generated within the cell. Cell injury and even cell death follow. If this process is repeated throughout the body, whole systems begin to fail, and the life of the person in whom this is happening is severely compromised. The disease primarily affects children, but adult onset is becoming more and more common.

Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection"

That's just a brief explanation, in nice sciencey terms for you. 
In reality it was the hardest thing I have ever been through. I watched as my son and daughter suffered with seizures and then eventually their whole bodies shutting down. I was the one holding them as they took their last breathes- their little bodies unable to fight anymore. 
Lane's fight was brief and spanned a mere 3 months from first seizure to him passing away. Three years later my daughter was diagnosed at age 4, we knew a ton more about how to control the symptoms and help her body fight. 
She made it past her 7th bithday and then one day uncontrollable seizures started.
This was picture was taken at the end of June 2011
This one was taken 4 months later (after many failed attempts to stop the seizures , a trip to Stanford for trial medication and many long days in Spokane PICU)
We brought her home like this (unable to communicate, unable to open her eyes, and with seizures all the time) and just over a month later she passed away in her sleep...I watched as she smiled her last smile and went to be with her brother. 

What can you do? 
Become AWARE!
Each year progress is made on the diagnosis and treatment ( maybe eventually a CURE!?) of mito. Newborn screening is essential to give families a chance to combat the disease with early detection. 
Google or Bing "Mitochindrial Disease" and you will come across tons of stories from families like mine. 

We are all fighting for the same thing- to save our children.
-------------

In honor of my two little angels I have a HUGE announcement to make!
After many long hours, sleepless nights and over a year and a half of blogging I am making a change. Something I should have done from DAY ONE, but honestly I was still very much grieving at the time and I kept trying to ignore the obviousness of it. 
Well its finally time to spill the beans!
My blog is getting a ...
(drum roll please...)

NEW NAME!

Introducing....

Averie Lane

That's right! 
Over the next few weeks I will be re-branding my blog and bringing together several businesses (photography, graphic design, Etsy, etc...) under one single ".com".
Don't worry. I will be making changes, but will try to keep it as painless for all my readers as possible.
I know I will potentially lose some readers (so I've been warned) and things might get bumpy for me, but I don't think I can continue on my current path. "Dimples and Pig Tales" just doesn't feel right and hasn't for so long- plus, no one EVER spells it right....lol. So I ask that you hang in there with me and support me as I move forward with this new part of my "blogging" life. I have some amazing new projects coming up and I can't wait to share them with you!

Thank you all so much! 

Follow Me on BloglovinFollow Me on InstagramFollowMe=Follow Me on Pinterest Follow Me on Google +Follow Me on Twitter
Related Posts Plugin for WordPress, Blogger...