Wednesday, September 29, 2010
Mito Awareness Week
Last week I kept up my Facebook posting different snippets about Mitochondrial Disorders. Nothing I could have put together could have been more beautiful than the awesome and touching video put together by Mito Mom Mandy Poche, who organized our first Baton Rouge area "Mito Meet-Up". 8 families invited, 1 ended up in the hospital, 1 had a stomach virus, and we ended up with 4 families in attendance.
The Bacot family came - our friends who also have a diagnosis of Leigh's Disease. Juliana made eight years old - proving that patients with this diagnosis can outlive their original prognosis by years by the grace of God.
The Poche family's youngest daughter was diagnosed very young with a mitochondrial disorder, but they suspect the middle child might also be affected, as her development was very delayed and shows some additional possible signs of a mito disorder.
Lastly, we met a sweet girl Morgan, who is in school at LSU and was diagnosed just recently with a mito disorder. We remain hopeful she will have many long years to overcome her disease. I think it was quite a relief for the family to know they are not alone, and that there is hope to fight this disease, despite the prognosis we are all given.
Mandy put together a touching awareness video, featuring each of our families. I'm so grateful she did this, and we look forward to another one next year!! You can see it here: http://www.youtube.com/watch?v=ry_eUeivyPE
Thanks for checking in on us... MEDICAID has paid it's first bills for Braden (select medicine co-pays and therapy co-pays), so we are super-excited about getting a little financial relief!! It's not totally covered, but every little bit helps! Currently, we are interviewing PCA workers to watch Braden in the evenings so we can take care of bills and make dinner, clean house, etc. - it's very exciting to know that soon we will get some help to maybe go on a date night on a regular basis!!
Thanks for checking in on us,
Braden, Kodi & Brad