Hey there Loves!
This post is referring to the below link that I happened to find while scrolling through Facebook.
This post is referring to the below link that I happened to find while scrolling through Facebook.
https://runsignup.com/Race/FL/Seminole/POTSPiDay5K2019?fbclid=IwAR1HCzoR5vsEhyUD1sCX1PwQUx1rKd_sGw0YJVsKDYRbNVhm241giw9ZBiQ
As I scrolled through Facebook completely frustrated with my own limitations, pain, and disability, this benefit caught my eye. After looking into it more I had this wild idea. But before sharing, I'd like to talk about what motivated the idea in the first place.
As you can see this 5K event is being hosted in memory of Christina Tournant. Christina was an extremely athletic, most excelled, intelligent and motivated individual. She was a bright light that was only dimmed by the battles no one could see. Christina was living with undiagnosed ulcerative colitis, gastroparesis, POTS, and EDS. Despite her demeanor and constant strive to succeed, her symptoms became too much for her to bear. She wrote the last message her parents would ever receive from her on Earth, "I'm sorry, I couldn't keep fighting."
Many of her symptoms are parallel to what myself and many other sufferers endure daily. Like Christina, I too, have left many doctors appointments frustrated and at a loss. How could it be that for 9 years of my own life, not one soul could explain what I was going through or even worse, the things I would be expected to go through years later. This battle is for life and every person with chronic illness such as Dysautonomia knows, this is no easy fight.
Now back to my wild idea. Though I won't be able to make the trip to Florida to participate in this benefit hosted by The Dysautonomia Project, I would still like to do what I am able and take this time to remember Christina Tournant. On March 10th I will be doing my own walk in her memory and will be donating to Dysautonomia International or The Dysautonomia Project as well. I would like to ask anyone who is unable to attend to do the same. Even if it's a walk around the house, the block, or a mile - it matters. Even if it's a dollar, five, or twenty - it matters.
My idea is that others will take the time to participate in remembering those who fight daily and those who have lost to their own. My hope is that this will spread awareness to the many symptoms and struggles that go along with these awful diagnoses, as well as other illnesses in general. Dysautonomia is not rare, but it is rare to find others, especially doctors, who are knowledgeable to treat us.
Please PLEASE consider taking the time to listen to Christina's story and participate in your own walk. Share your experience on March 10th and let her family know she is not forgotten. She could not keep fighting, but as a community, we can fight for her.
My husband and I completed our "virtual" walk in memory of Christina on March 10th. We walked around a reservoir nearby that was approximately one mile in distance. As a patient with POTS and EDS myself, I was very surprised to have walked a mile without stopping. But it was when I completed that mile when I truly stopped myself and thought of Christina. I considered all of the things she must have been feeling, the same feelings that I too have felt. I considered how athletic in nature she was and how heartbreaking it can be when health forces its limitations upon you. That's when I made the decision to walk one more mile for her. As we did our second loop, I made sure to power walk the entire time. I wanted to push my body to the limits for Christina. I wanted to be stronger than the debilitating illnesses that we both share. I wanted to fight all the fight I could for Christina and all the other sufferers of chronic illness.
I encourage each of you to remember Christina when your hope seems lost. I encourage you to walk your own mile, if you're able, and donate to this beautiful cause. Thank you to the Dysautonomia Project for networking this benefit well enough that I was able to participate from afar myself.
SPOONIES, you do not fight alone. We walk for you. We fight for you.
Much Love!
Aaren
Christina's story:
https://youtu.be/VYyUeKDAzOg
A Message from Tava Wilson, Christina's Mother concerning the benefit held in memory of Christina:
"I don't want others to have to struggle to find knowledgeable medical help, the way we did. This event honors not only the memory of my daughter, but also all individuals currently suffering with POTS, EDS and other forms of Dysautonomia. This day is YOURS." This fun run/walk will benefit The Dysautonomia Project which is a 501(c)(3) not for profit organization whose mission is to raise educate patients, physicians, and communities on dysautonomia. Dysautonomia involves disorders of the autonomic nervous system, and usually involve abnormal symptoms in many organ systems, including cardiac, gastrointestinal, neurological, and pulmonary, as well as others. Dysautonomia, an invisible illness, may be one of the most misdiagnosed medical conditions of all time. The biggest problem in autonomic medicine today is the lack of knowledge about dysautonomia in communities and with community-based physicians. This effort is personal for me. I am blessed beyond measure to be the mother of Christina Tournant, who voluntarily gave up her fight with POTS/Dysautonomia on March 5th, 2015. Christina loved math, so naturally Pi Day (3/14) was her favorite. Since Pi day falls on a Thursday, we are holding the event the Sunday before (3/10). In high school, Christina won numerous awards, both for athletics and academics. Full of passion for knowledge, Christina was valedictorian of her high school and was accepted to her dream university: The Massachusetts Institute of Technology (MIT), in Cambridge, MA. Throughout these years of achievement, Christina suffered from numerous unusual symptoms and spent MANY hours in the offices of a variety of medical specialists. Christina was finally diagnosed with POTS/Dysautonomia after a friend suggested this as a possibility. Following her diagnosis, we were given misinformation or no information regarding the many symptoms she suffered from or what to expect. Christina was essentially led to believe that she could control this by "thinking positive thoughts." The Doctors did this because they did not know enough about Dysautonomia to be able to educate us, and unfortunately made it seem like it was not a big deal (which was clearly not the case!!). The AWARENESS and better understanding of Dysautonomia by medical professionals is KEY, and Christina's story exemplifies why it is SO URGENT. By spreading awareness about Dysautonomia and helping to fund research and treatment centers, I/we hope to help others who are undiagnosed or misdiagnosed and are suffering. PLEASE help us do this by getting involved in our event. No donation amount is too small:-). -Tava"
As I scrolled through Facebook completely frustrated with my own limitations, pain, and disability, this benefit caught my eye. After looking into it more I had this wild idea. But before sharing, I'd like to talk about what motivated the idea in the first place.
As you can see this 5K event is being hosted in memory of Christina Tournant. Christina was an extremely athletic, most excelled, intelligent and motivated individual. She was a bright light that was only dimmed by the battles no one could see. Christina was living with undiagnosed ulcerative colitis, gastroparesis, POTS, and EDS. Despite her demeanor and constant strive to succeed, her symptoms became too much for her to bear. She wrote the last message her parents would ever receive from her on Earth, "I'm sorry, I couldn't keep fighting."
Many of her symptoms are parallel to what myself and many other sufferers endure daily. Like Christina, I too, have left many doctors appointments frustrated and at a loss. How could it be that for 9 years of my own life, not one soul could explain what I was going through or even worse, the things I would be expected to go through years later. This battle is for life and every person with chronic illness such as Dysautonomia knows, this is no easy fight.
Now back to my wild idea. Though I won't be able to make the trip to Florida to participate in this benefit hosted by The Dysautonomia Project, I would still like to do what I am able and take this time to remember Christina Tournant. On March 10th I will be doing my own walk in her memory and will be donating to Dysautonomia International or The Dysautonomia Project as well. I would like to ask anyone who is unable to attend to do the same. Even if it's a walk around the house, the block, or a mile - it matters. Even if it's a dollar, five, or twenty - it matters.
My idea is that others will take the time to participate in remembering those who fight daily and those who have lost to their own. My hope is that this will spread awareness to the many symptoms and struggles that go along with these awful diagnoses, as well as other illnesses in general. Dysautonomia is not rare, but it is rare to find others, especially doctors, who are knowledgeable to treat us.
Please PLEASE consider taking the time to listen to Christina's story and participate in your own walk. Share your experience on March 10th and let her family know she is not forgotten. She could not keep fighting, but as a community, we can fight for her.
My husband and I completed our "virtual" walk in memory of Christina on March 10th. We walked around a reservoir nearby that was approximately one mile in distance. As a patient with POTS and EDS myself, I was very surprised to have walked a mile without stopping. But it was when I completed that mile when I truly stopped myself and thought of Christina. I considered all of the things she must have been feeling, the same feelings that I too have felt. I considered how athletic in nature she was and how heartbreaking it can be when health forces its limitations upon you. That's when I made the decision to walk one more mile for her. As we did our second loop, I made sure to power walk the entire time. I wanted to push my body to the limits for Christina. I wanted to be stronger than the debilitating illnesses that we both share. I wanted to fight all the fight I could for Christina and all the other sufferers of chronic illness.
I encourage each of you to remember Christina when your hope seems lost. I encourage you to walk your own mile, if you're able, and donate to this beautiful cause. Thank you to the Dysautonomia Project for networking this benefit well enough that I was able to participate from afar myself.
SPOONIES, you do not fight alone. We walk for you. We fight for you.
Much Love!
Aaren
Christina's story:
https://youtu.be/VYyUeKDAzOg
A Message from Tava Wilson, Christina's Mother concerning the benefit held in memory of Christina:
"I don't want others to have to struggle to find knowledgeable medical help, the way we did. This event honors not only the memory of my daughter, but also all individuals currently suffering with POTS, EDS and other forms of Dysautonomia. This day is YOURS." This fun run/walk will benefit The Dysautonomia Project which is a 501(c)(3) not for profit organization whose mission is to raise educate patients, physicians, and communities on dysautonomia. Dysautonomia involves disorders of the autonomic nervous system, and usually involve abnormal symptoms in many organ systems, including cardiac, gastrointestinal, neurological, and pulmonary, as well as others. Dysautonomia, an invisible illness, may be one of the most misdiagnosed medical conditions of all time. The biggest problem in autonomic medicine today is the lack of knowledge about dysautonomia in communities and with community-based physicians. This effort is personal for me. I am blessed beyond measure to be the mother of Christina Tournant, who voluntarily gave up her fight with POTS/Dysautonomia on March 5th, 2015. Christina loved math, so naturally Pi Day (3/14) was her favorite. Since Pi day falls on a Thursday, we are holding the event the Sunday before (3/10). In high school, Christina won numerous awards, both for athletics and academics. Full of passion for knowledge, Christina was valedictorian of her high school and was accepted to her dream university: The Massachusetts Institute of Technology (MIT), in Cambridge, MA. Throughout these years of achievement, Christina suffered from numerous unusual symptoms and spent MANY hours in the offices of a variety of medical specialists. Christina was finally diagnosed with POTS/Dysautonomia after a friend suggested this as a possibility. Following her diagnosis, we were given misinformation or no information regarding the many symptoms she suffered from or what to expect. Christina was essentially led to believe that she could control this by "thinking positive thoughts." The Doctors did this because they did not know enough about Dysautonomia to be able to educate us, and unfortunately made it seem like it was not a big deal (which was clearly not the case!!). The AWARENESS and better understanding of Dysautonomia by medical professionals is KEY, and Christina's story exemplifies why it is SO URGENT. By spreading awareness about Dysautonomia and helping to fund research and treatment centers, I/we hope to help others who are undiagnosed or misdiagnosed and are suffering. PLEASE help us do this by getting involved in our event. No donation amount is too small:-). -Tava"
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