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?
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.