It was a great year for us, for Abby.
Granted, we have had our share of hiccups, but we also confirmed some suspicions, it is clear that there are some Mast Cell issues and immune issues occurring that explained the increase in health issues, it is not progression, but Mast Cell issues. This is HUGE. This means my Mom Gut was RIGHT(I love it when I am right!). It would have been easier to simply throw in the towel after 16 years of hunting for a diagnosis and just accept the Mitochondrial Depletion as the only issue. We don't give up. We just KNEW there was more to Abby then that.. It kind of frightens me a little to think that if I had quit looking for answers? How very sick Abby would be. Had I just accepted the Depletion I can only imagine how grim my post would be today.
2013 gave me back hope. Helped me realize what some would call nuts, we call determination and hope.
2013 was packed full of moments when I realized how incredibly lucky I am to have an amazing family.
I really hope 2014 is just as full. For once I feel like a grown up. I know whatever 2014 brings, we can do it!
How fortunate I am to have have my online friends. I am in awe of these strong women and men. Of their amazing knowledge. Of their willingness to read through articles looking for clues to not just help their own children or selves, but to help others. So many are fearless in seeking answers. Their willingness to keep fighting even though it might be too late for their child, they fight to protect yours. I am surrounded by hero's.
I will also always remember 2013 as "Justina's Year.". It is now public knowledge that some Drs. discriminate against patients who have Mito,a proven genetic disease. On one hand I am grateful it is no longer the dirty little secret of the Mito Population, on the other hand I don't think anything in my life has horrified me more then knowing the very Drs we trust to heal us are so willing to hurt us.
My hope is in 2014 there are no more cases of false allegations. That we are no longer discriminated against for having a genetic disease. That as a population we are willing to be brave and speak out. This type of discrimination was supposed to have ended with the last Leper colonies- clearly it hasn't.
On a positive, I have witnessed our community unite. As a community we will no longer allow our friends,our community to be punished and discriminated against. I am beyond grateful that MitoAction has led the charge. They are the ONLY patient advocacy organization that I feel actually is willing to prioritize the patient. Their advocacy may protect hundreds of families from suffering what Justina has suffered, what so many others have suffered over the years during the veil of secrecy that was causing more harm then good. I am so grateful that 2013 may be the beginning of the end of hideous and destructive treatment of Mito Patients. For all those willing to advocate, who work tirelessly to speak out, to offer support, to raise funds,that have shared their stories of horror of being abused and discriminated against by Medical personnel, those who are willing to stand in the cold? You are all hero's and I am grateful.
I see 2014 being a great year for my family. I have every hope that we will find a way to open Abby's world more. To control some of the symptoms that too often control her body. I hope I continue to grow, to feel like a grown up. That I never again feel afraid or nervous about advocating for Abby. I hope as our world grows brighter I am able to give more back.
Of course I still hope Obamacare is stopped before it finishes destroying our Country- I figure if hoping did Abby so much good this year, the hope of the majority of American's to protect our Country from ruin has got to have a little power right? :-)
Happy New Years! May 2014 bring health. Strength. Moral clarity. Unity.