- Diseases, Disorders & Conditions
Mitochondrial Disease Awareness Week Part 3: Courageous Optimism & Gratitude
What Have You Learned About Mitochondrial Disease?
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My Son, Alex, Has Mitochondrial Disease and Autism
So what is courageous optimism? It is having the courage to hope when the probability of success is marginal at this time. When I started this entire campaign for Mitochondrial Disease Awareness Week, I did it for my son. It was completely self serving. My expectations were low of all my friends. I am happy to report that they were not only support be exceptionally generous and compassionate. I am very fortunate they shared my posts. Last year I participated but only had readers from the USA and from Canada. Honestly, I think I am a horrible writer and appreciate anyone who suffers through what I write. Those that read my work, I thank you.
The world of Mitochondrial Disease is so hard and incomprehensible to imagine that I never thought my friends would help carry the message for me. Trust me there are times when it is too much for me to bare. But it is the reality of the people who have this disease must dwell. I know I live there. My Mom had Cancer and died. Dad does too and is not expected to live much longer. I had to have a radical hysterectomy last year because I had growths on ovaries. My maternal Uncle died of Cancer. My maternal grandmother died of ALS. My brother has diabetes. My other brother has Learning Disabilities and cyclic vomiting. I do not even go to the doctor because I can't get there and do not want to hear I. have health problems too. We have a history of infant deaths and no one lives past 70 in our family. We are short timers. We never knew why until my son was diagnosed with Mitochondrial Disease.
Before this week I did not think the world was ready to hear about Mitochondrial Disease nor from those who suffered with it. They did not want to know about this silent disease which anyone could suddenly be stricken with. Honestly, given a choice, I could have lived my whole life without knowing about it except for the toll it is taking on childrens' and adults' lives Internationally.
However, the world is changing for the better regardless of the wars. I have this theory that people are ready to be compassionate and caring to one another. None of us are what is portrayed in the movies. We are not super heroes or maybe we all are now? I believe we are all kind caring people who just want a decent life with our families and friends. We all, given the opportunity, would do something kind for one another. The world is filled with decent people tired of living in indecent times that do not reflect our morals or values. Goodness is all around us but obscured by propaganda to make us think we are all enemies constantly competing for money, status and/or fame. Maybe we all our superheroes because we truly do care for one another because we know all we have is each other, we do good things for each other each and every day and just because it is not reported does not mean it isn't happening.
So when I started writing these articles about Mitochondrial Disease Awareness Week and asking people to participate I was shocked my friends on facebook did. My account is closed because I have had a stalker so if my friends did not share the message it would have died. My friends not only participated by sharing but they shared over and over again. One helped me organize my posts so they were more reader friendly and this has really helped. My friends shared all over the world. I talked to one dear friend who shall remain nameless because I would not publish her name without her permission from India. She put the word out in India for me. So many wonderful people helped. A long time good friend from Africa shared my links, and in Canada, Australia and so on and so forth. So many blessing and great people spreading the word during Mitochondrial Disease Awareness Week making a positive impact on the world, who I was certain would unfriend me on facebook, having shared the message Increasing public awareness.
Last year my Mitochondrial Disease Awareness Hub had reached reached two countries and this year, with the help of my extraordinary wonderful friends, my articles have made twenty countries in less than 48 hours. This spread of awareness has the potential to save lives. On the United Mitochondrial Disease Foundation website (Link will be listed below) they have a number which any doctor can use to consult a Mitochondrial Disease Specialist to reduce the diagnosis and treatment time from years to a few days. The line is open to doctors only but this my friends will possibly save lives. Your work has made a difference.
Until there is a cure you will never hear me declare victory but you will hear a huge thank you to all my friends around the globe who helped spread the word. By spreading the word you are saving lives.
A cure for every type of Mitochondrial Disease is the Omega. We are not there you but your awareness and you spreading the word with family, friends, and associates brings us much closer to that cure. With your help dear friends these articles reached over fifty countries in 72 hours on every continent but Antartica. We will get them next year.
A huge hug and even bigger thank you from Alex and I.
United Mitochondrial Disease Foundation
- Home-The United Mitochondrial Disease Foundation
The United Mitochondrial Disease Foundation
The Movie: The Magic Bracelet
Alex at Shands Children's Hospital
Alex At Shand's Children's Hospital Playing On Their Touch Screen Everglades Game
In 2002 vs 2015
In 2002 almost no one knew what Mitochondrial Disease was in Florida or they told me my son looked too healthy to have Mitochondrial Disease even as we were making plans to fly to Ohio for the skin and muscle biopsy which confirmed his diagnosis.
In 2015, all of Alex's doctors know what Mitochondrial Disease is and they work very diligently to give him the very best care he can receive. I wish I could say the State of Florida was keeping pace but hopefully they will eventually catch up. Everything happens in it's own time. I am not going to lie to you there are still occasionally times with physicians we struggle but those day are few and far in between. Alex has a fantastic team of doctors at Shands Hospital at the University of Florida. They have been wonderful to him. Do we get an intern or even a doctor who has not done their homework, occasionally...absolutely but it is not like it use to be. In 2002 almost no one knew about Mitochondrial Disease in Florida. Despite the fact Alex still does not have a local doctor or hospital and we have to fly over 200 miles one way to get Alex care at Gainesville, which is exhausting for both of us, it is still so much better than it was back in 2002.
I do! So thank you on and all for your help!
Other Families Making Their Stories Known
When I first joined UMDF it had a relatively small number of parents I knew about. Now since people are actually documenting their children's struggles through Mitochondrial Disease we feel less isolated and alone. I think too the videos really help show exactly how much medical care is required. Parents of children with Mitochondrial Disease do not always have a wonderful support system especially if they live in rural areas of the country like we do. I literally live in a town where people do not know what Mitochondrial Disease is. I have tried to explain it but the locals think it is too complicated and peoples' defenses go up immediately when they come across something they do not know. I literally have been told on several occasions that my son is the only child in South Florida that has this disease? What can I say but okay and move on. If a person does not want to learn about something you can not make them.
Awareness has grown significantly throughout the country thanks to organizations like UMDF and generous Hollywood Stars like Jack Black. I'd also like to state that the doctors that specialize in this area are exceptionally dedicated. For instance there was an attending had a disagreement with my son's doctor's treatment plan and told me to call one of the UMDF doctors. I thought this was inappropriate especially since the conversation occurred in front of my son. I emailed the UMDF doctor who use to be Alex's doctor and he responded immediately. I adore Alex's treating physicians at Shands and Mitochondrial Doctors that are concerned about the research and saving each and every single person with this disease. This is extraordinarily rare. Now UMDF has put a telephone number up so regular doctors can consult the experts in Mitochondrial Disease.
Public Awareness Has Grown in The Medical Community Through Family Videos and Mitochondrial Disease Conferences and Activism
Countries We Reached in The Last 24 Hours Together
Thank you to all who shared!!
Mitochondrial Disease Awareness Ribbon
What More Can You Do?
The same three things I have asked you.
1) Share and ask your friends around the world to share.
2) Display the Green Ribbon in Support of Mitochondrial Awareness Week.
3) Talk to your friends, family and associates about this disease so they are aware.
I am so blessed to have so many wonderful friends who have helped me this week instead of ignored me. I leaned on all of you for signatures for the Myelin Project to get legislation passed to screen infants for Adreno Leuko Dystrophy (ALD) just a few weeks ago. All of you are so tolerant with my social causes but I believe we can all make the world a better place together.
This means my friends give me courage and I do not have it naturally. My friends who help me with these causes who have beautiful hearts and minds are why I am so optimistic a cure will be found for this disease.
My friends at home do not read my facebook page as they know me but I am very grateful for their support too. They have been on this journey of Mitochondrial Disease with me as well. I no longer questioning if a cure will be found but when. The faster you spread the word the quicker the quicker it will happen.
The generosity I have experienced in my efforts in Mitochondrial Disease Awareness Week have been very humbling and rejuvenating. Thank you for Alex and for me.
If you are interested In getting more involved contact The United Mitochondrial Disease Foundation. They are the only organization I have any association with that is why I am referring you to them although if you are from another country they will probably refer you to your local organization. They all work together as you will notice in many of the videos they list all the organizations to contact.
Thank you again.
Alex Is Worth A Cure and So Are All Those Affected!
- Mitochondrial Disease Awareness Week 2015 Part 2; It Can't Just Be Autism?
When It Can't Just Be Autism, It Must Be Mitochondrial Disease.
- Mitochondrial Disease Awareness Week 2015; Part 1
How You Can Participate in Mitochondrial Awareness Week And Make a Difference!
- Mitochondrial Disease Awareness Week
Mitochondrial Disease Awareness Week September 14th-21st.
- Home-The United Mitochondrial Disease Foundation
The United Mitochondrial Disease Foundation