Saving me from Marfan syndrome GoFundME CrowdFunding Exposure Campaign

Toni Kähärä, I am 34 years old and 2 years ago I was diagnosed with Marfan syndrome as well as Chiari malformation. There is no cure for either of these terminal illnesses and especially Marfan can cause sudden death because of heart attacks and the risk of a rupture of the aorta. Help fund my medical bills! Save my life.

https://www.gofundme.com/marfan-treatment

Smile, though your heart is aching
Smile, even though it’s breaking
When there are clouds in the sky
you’ll get by……

Hello, my name is Toni Kähärä, I am 34 years old and 2 years ago I was diagnosed with Marfan syndrome as well as Chiari malformation. There is no cure for either of these terminal illnesses and especially Marfan can cause sudden death because of heart attacks and the risk of a rupture of the aorta. I live in constant pain and rarely find the strength to even get out of my bed.

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I am not ready to die. 

While I cannot be cured, treatment could improve my quality of life and life expectancy considerably. Public healthcare only pays for general practitioners and painkillers that do not really work, and seeing a Marfan expert who could help improve my condition requires private funding. I am asking for your help because my pension barely pays the rent and I do not have a family or another safety net to support me financially.

The bare minimum sum to get treatment is five thousand euros. I have calculated that this is what it would take to a) get an appointment with several relevant specialist doctors, b) pay medical bills for things like MRI, CT-scan, Holter Monitor and possibly a vagus nerve stimulator, c) cover medicine costs of about 1200€ a year.

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My story

I am originally from Finland but moved to Tartu, Estonia for my husband’s studies. Before 30, I led a normal life. I had a job, I had dreams, I used to enjoy long walks, dancing and socializing, and I enjoyed being creative. Then I fell seriously ill and slowly but surely, my condition started to worsen. It started with heavy chest pain. Via public healthcare, I was first falsely diagnosed with panic disorder and put on depression medication. I went through several psychological tests only to come to the result that I was neither depressed nor had a panic disorder. Still, the doctors did not take my symptoms seriously. I had extremely painful heart issues, I repeatedly lost feeling in my arms or legs, and I fainted on regular basis. I had to fight my way into getting an MRI and a year later, I finally saw a specialist in genetic disorders. Two years after I had fallen ill, I was diagnosed with Marfan Syndrome and Chiari Malformation. I was told that neither of my conditions are curable and that I would have to learn to live with them. Within the last 4 years my situation has gone from dire to hopeless. I have had multiple heart attacks and underwent brain surgery. Meanwhile, the public healthcare system cannot do much for me. I was given painkillers, heart medication, blood pressure medication, and muscle relaxants that have done little to alleviate my symptoms and was informed that I would not make it to 40 years old.

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My daily life is filled with agony. I do not get enough sleep because even when fully medicated, the pain keeps me awake and I cannot walk for more than a few hundred meters even on a rare good day. I have completely lost my autonomy to Marfan syndrome and have become incapable of doing everyday tasks such as laundry, doing the dishes, going shopping or even cleaning. However, I have not given up. I know proper treatment can enable me to have an almost normal life and I am ready to do anything and everything to have a chance at beating this disorder and live a life free of agony.

If you have any questions or doubts, please do not hesitate to contact me. I am more than willing to provide medical documents and a doctor’s statement. My friends have written testimonials and will provide you with their contact information if needed. Every cent you donate will be spent on doctors’ fees, transportation, medicine, and medical exams. If we achieve my goal, I will also be able to purchase a wheelchair that will give me the mobility to leave my apartment from time to time. Without the individualized treatment of a specialist I will continue to suffer and I will eventually die of cardiac arrest.

I thank you from the bottom of my heart for considering my cause. Whether you donate, share my story and the link to this campaign with your friends, or simply if you care, I thank you for your support! Thank you for providing me with hope and a chance at a better life.

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You can find more information about my illnesses here:

https://www.marfan.org/about/marfan

https://www.mayoclinic.org/diseases-conditions/chiari-malformation/symptoms-causes/syc-20354010

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