I really don't know what I would have done without all the amazing support we receive from our family, friends and even strangers. Just knowing they are there and that I could call them anytime is an amazing feeling. Thank you for letting us fall apart and helping put us back together.
Thursday, September 20, 2012
Support - Mito Awareness Week
Last night we headed to California Pizza Kitchen for dinner, for what I thought was going to be a smallish group. Boy was I wrong.
Our group seemingly took over a portion of the dining room. I was amazed and humbled that people drove quite a long distance just to come support Will and Mito awareness.
I forgot my camera (!) but my mom brought hers; I will post some pictures later, but for now I just wanted to say thank you to:
The Abbotts, The Mitchell's, The Zobac's, The Kotzubue's, The Brod's, The Peterson's, The Vinklarek's, The Wooten's, Ms. Monica & Gabriel, Ms. Janet, Ms. Maria, Ms. Milly and of course, my sisters and parents. More than 30 people!
I know that many others were there in spirit with us and that some are going to CPK around Texas - shout out Piesker family in Dallas - and that others are going throughout the week in Houston - shout out Beth William's family and Jennifer Moore's family! (Don't be offended if I missed you, these are people who posted on FB or blog that they have gone/are going - if you go, post a comment :-) !)
Lisa made some Mito cookies for the occasion - nutter butters and lady fingers with green icing "mito" on top.
I was also so happy to see Elizabeth Baker and her family tonight. They just found out not a week ago that their son was diagnosed with Leigh's as well. I know this might sound silly, but I was so incredibly proud of her. I think back to when we found out and I'm pretty sure I was still hiding under the covers recovering from a nervous breakdown.
And now, some Leigh's-specific Mito facts:
Leigh's disease is an inherited lethal, progressive, predominately pediatric, neuromuscular disorder, for which there are no approved treatments or cure.
A child with Leigh's often appears normal at birth but typically begins displaying symptoms within a few months to 2 years of age. Initial symptoms can include the loss of basic skills such as sucking, head control, walking and talking.
Understanding Mitochondrial Disease has the potential to transform medicine and improve the diagnosis and treatment for a range of diseases that affect millions of people.
Mitochondrial dysfunction is implicated in many more common illnesses like Alzheimer's, Parkinson's disease, diabetes, hypertension, osteoporosis, some cancers, and the aging process.