To: The New York State House, The New York State Senate, and Governor Andrew Cuomo
MITO CRISIS
Victory! The creator of this petition declared the campaign a success. You can still sign the petition to show support.
Dear Honorable State Legislators,
CRISIS: is any event that is, or is expected to lead to, an unstable and dangerous situation affecting an individual, group, community, or whole society.
Our MITO Community is being told that we must prove mitochondrial disease is a crisis before our legislators will listen to us, take our unmet needs and struggles seriously, and help us. We are also being told our MITO population numbers aren’t significant enough, and the healthcare system simply can’t afford to help us. None of these reasons/excuses justify inaction for, or exclusion of, our MITO Community.
Isn’t it a crisis when the lives and wellbeing of those living with mitochondrial disease don’t matter, and are repeatedly ignored by those who have it within their power to help us?
Isn’t it a crisis when nobody recognizes mitochondrial disease for the serious, debilitating and life-threatening condition it is; denying us the same level of care and services those affected by equally devastating diseases (such as cancer or Aids) have?
ISN’T THIS THE TRUE CRISIS!
It’s not a matter of if our MITO Community is in a state of crisis, but that it has been in a state of crisis and nobody has been willing to do anything about it!
Is it not crisis enough to stand by and watch our loved ones struggle day in and day out, slowly deteriorating before our eyes, from this terrible life altering and incurable disease?
Is it not enough of a crisis already when we lose our loved ones to this horrific disease?
Is it not crisis enough to lose all financial stability, to have to go without medications and services, go through bankruptcy, live in fear of losing our homes, and never have enough money to make ends meet without reaching out to family members and our communities?
Is it not crisis enough to go without adequate appropriate medical care and support services regularly, needing to travel out of state to see numerous specialists, repeatedly being hospitalized for one problem after another stemming from mitochondrial disease?
Is it not enough of a crisis for mitochondrial diseases to be so poorly understood, and for there to be so few doctors trained and capable of caring for MITO patients that the majority of MITO patients and their families are inconceivably underserved? All too often we are abandoned and/or mistreated by healthcare providers, left all alone to deal with this chronic and complex disease the best way we can. In addition, often times we are accused of Medical Abuse /Munchausen’s by proxy or of everything being in our head when seeking medical care. These situations can, at times, reach criminal levels, but nobody stands up for our rights! These traumatic experiences scar us and hurt us deeply, causing many to stop seeking help.
Is it not crisis enough to watch this terrible disease destroy our families? By nature, mitochondrial diseases cast overwhelming despair, uncertainty and instability on the whole family.
Mitochondrial disease and the multitude of unique often unexplainable problems associated with it, in of itself, is crisis enough to deal with!
Many families, including my own, have multiple members affected compounding this crisis!
What kind of a world do we live in that doesn’t consider MITO a CRISIS?
I hope that you will agree with me that MITO IS A CRISIS and the time to act is now!!!
Catherine LaFond-Evans
Founder of MITO HOPE and HELP but most importantly, I am a mother who has already lost one child to MITO. I am forced to watch as another deteriorates and suffers in pain 24/7 lacking adequate, appropriate medical care and support services.
CRISIS: is any event that is, or is expected to lead to, an unstable and dangerous situation affecting an individual, group, community, or whole society.
Our MITO Community is being told that we must prove mitochondrial disease is a crisis before our legislators will listen to us, take our unmet needs and struggles seriously, and help us. We are also being told our MITO population numbers aren’t significant enough, and the healthcare system simply can’t afford to help us. None of these reasons/excuses justify inaction for, or exclusion of, our MITO Community.
Isn’t it a crisis when the lives and wellbeing of those living with mitochondrial disease don’t matter, and are repeatedly ignored by those who have it within their power to help us?
Isn’t it a crisis when nobody recognizes mitochondrial disease for the serious, debilitating and life-threatening condition it is; denying us the same level of care and services those affected by equally devastating diseases (such as cancer or Aids) have?
ISN’T THIS THE TRUE CRISIS!
It’s not a matter of if our MITO Community is in a state of crisis, but that it has been in a state of crisis and nobody has been willing to do anything about it!
Is it not crisis enough to stand by and watch our loved ones struggle day in and day out, slowly deteriorating before our eyes, from this terrible life altering and incurable disease?
Is it not enough of a crisis already when we lose our loved ones to this horrific disease?
Is it not crisis enough to lose all financial stability, to have to go without medications and services, go through bankruptcy, live in fear of losing our homes, and never have enough money to make ends meet without reaching out to family members and our communities?
Is it not crisis enough to go without adequate appropriate medical care and support services regularly, needing to travel out of state to see numerous specialists, repeatedly being hospitalized for one problem after another stemming from mitochondrial disease?
Is it not enough of a crisis for mitochondrial diseases to be so poorly understood, and for there to be so few doctors trained and capable of caring for MITO patients that the majority of MITO patients and their families are inconceivably underserved? All too often we are abandoned and/or mistreated by healthcare providers, left all alone to deal with this chronic and complex disease the best way we can. In addition, often times we are accused of Medical Abuse /Munchausen’s by proxy or of everything being in our head when seeking medical care. These situations can, at times, reach criminal levels, but nobody stands up for our rights! These traumatic experiences scar us and hurt us deeply, causing many to stop seeking help.
Is it not crisis enough to watch this terrible disease destroy our families? By nature, mitochondrial diseases cast overwhelming despair, uncertainty and instability on the whole family.
Mitochondrial disease and the multitude of unique often unexplainable problems associated with it, in of itself, is crisis enough to deal with!
Many families, including my own, have multiple members affected compounding this crisis!
What kind of a world do we live in that doesn’t consider MITO a CRISIS?
I hope that you will agree with me that MITO IS A CRISIS and the time to act is now!!!
Catherine LaFond-Evans
Founder of MITO HOPE and HELP but most importantly, I am a mother who has already lost one child to MITO. I am forced to watch as another deteriorates and suffers in pain 24/7 lacking adequate, appropriate medical care and support services.
Why is this important?
Please support proposed NY State MITO legislation S3250/ A5174