A scattered miracle
A scattered miracle
What will you fundraise for today?
Original Czech text translated into English
Original Czech text translated into English
Description
My name is Lucie, I am 31 years old and I am a proud mother of a seven-year-old girl Emma.
My story began sixteen years ago, when I was a thirteen-year-old girl facing an unknown enemy. After nearly a year of being treated by doctors for all sorts of things, including polio, I was diagnosed with multiple sclerosis in 2008. By that time, I was bedridden and unilaterally blind. The disease progressed rapidly, perhaps due to the stress of the misdiagnoses, and brought me to the point where I had to learn to walk again.
The first manifestations of the disease came in the form of unexpectedly tripping over the toe of my foot, and I gradually lost sensation in the entire left side of my body. As one of only eight children in the entire country with this diagnosis, I found myself in a situation where the doctors themselves did not know how to treat us. Thanks to the courage of the doctors at the RS Centre on Charles Square in Prague, I became part of an experimental treatment that gave me stability for a while.
The year 2012 brought another twist - an allergy to interferon beta, which was a blow not only for me, but also for the doctors who were faced with the question of how to proceed. I went through a series of treatments, none of which worked as expected. And so began a journey full of challenges and obstacles. Something approaching twenty attacks had robbed me of sensitivity, sight, the ability to walk, but never my determination. I learned to fight. Each attack took something from me, but never broke me.
In the last four years, multiple sclerosis has hit me particularly hard. I lost sensation from my knees down and gradually lost my sight. Today I can only see 5% in my left eye and 20% in my right. The world as I knew it is lost in darkness. I have become a guide in an unfamiliar world where I navigate with my hands. But this loss has not robbed me of my desire to live and give my story away.
I am the only parent of my daughter, and even though I had to leave my job due to painful migraines and vision loss, I chose not to give up. I decided to share my story, my experiences and my strength with others. I record podcasts about multiple sclerosis and mental health because I believe that stories are where the power lies. When I got my diagnosis, I felt lost. Today, I know that this diagnosis is not the end - it's the beginning of a transformation.
Multiple sclerosis has taught me to rethink life, understand my limits and redefine my values. Helping other people with similar experiences has become my life's mission. And while life with multiple sclerosis is not easy, I am here to show that it is possible to live it to the fullest - and to make something meaningful out of it.
In November I was struck by another attack of multiple sclerosis, which robbed me of almost all my sight.
Before that, I had perfectly good vision in my right eye and about 30% vision in my left eye.
Today the situation is completely different - I can see only 5% in my left eye and about 15% in my right eye. I have no spatial vision and I am completely blind in the dark. I have to feel my way with my hands to move around.
I live alone, which means that I am dependent on the care of my mother, who has to look after me because my health does not allow me to do so otherwise.
Despite this drastic change in my health, I was told at the time of the disability pension decision in August that my condition had not changed, which is completely absurd. In addition, the state refuses to grant me any kind of care allowance, mobility allowance, or even a disability card, which would at least help with the cost of travelling to the doctors - I currently pass almost 3,000 a month just in fares.
A week ago I submitted a new claim for the benefit with a fresh medical report, where my doctor clearly states that in this condition it is very difficult, if not completely impossible, for me to work. Unfortunately, I had to appeal the denial of my other benefits.
For almost a year now, we have been living solely on disability, which has been extremely difficult for me and my family.
Please help me get through this challenging time and get the funds I need for basic living needs and care.
Any donation that will help me with the cost of living, medical care and mobility will be extremely valuable.
Why would we want to raise 460,800? The amount will be used for;
- Rent and utilities
- Home insurance, internet and phone
- Travel to Prague to see doctors
- Medicines and therapies, rehabilitation
- Food, drugs
- School canteen for Emma
Thank you to everyone who helps and becomes part of the Multiple Sclerosis Miracle...

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