Mary Beth Johnson, 28, suffers from anemia, a DNA repair disorder found in only one person out of 131,000. (Photo: Mary Beth Johnson/Metro.co.uk)
A cook with a killer with a rare disease, who could observe the onset of an incurable disease at any time, made farewell videos that were shown at her own funeral. Mary Beth Johnson, 28, took these videos after birth on the condition that she had a higher risk of developing a fatal cancer.
Maria, originally from Chicago, Illinois, was born with a DNA repair flaw called Fanconi anemia, which means she is more susceptible to bone marrow failure, organ abnormalities and certain cancers. The cause was a genetic defect in the gene carried by both parents, which led to the diagnosis of Maria and her brother Daniel.
Danielle died tragically of bone marrow failure at the age of seven, because the doctors were convinced that her illness would also kill her. Fearing that she will lose her life in a few months or even years, Mary has decided to make a collection of seven funny videos that will be presented at her funeral to make her family laugh.
Mary said: I began to accept that I could die when I was 17 or 18. I wanted to take responsibility and make sure I had the last word in case something unimaginable happened.
Mary married 27-year-old Ben in July 2014. (Photo: Mary Beth Johnson/Metro.co.uk)
In three or four years I made about seven videos that I wanted to make at my funeral. I saw it as a way to protect my family. Those videos had to be funny to make my family laugh.
But when I grew up, I decided I didn’t want to die, and I wanted to do everything in my power to make sure that didn’t happen, so I finally took it.
At the age of one, Mary was diagnosed with an incurable DNA repair disease, Funkoni’s anemia. This means that her white blood cell is so dangerously low that her immune system is weakened and she is at great risk of becoming ill.
In many cases, this disease leads to bone marrow failure or the development of fatal cancer. In the United States, only one person in 131,000 was born with fungal anaemia.
Maria, on the left, in the picture with her brother Daniel, on the right, who unfortunately died of a bone marrow failure at the age of seven. (Photo: Mary Beth Johnson/Metro.co.uk)
Mary said: I’m 800 times more likely to get certain types of cancer than other people. As I got older, my life expectancy increased.
When I was four years old, my life expectancy was seven years, and now I am 28, or 34 years old. I’ve lived my whole life knowing that I could die in a few years. It made me incredibly uncomfortable and I always felt like I was walking on eggshells.
My brother died when I was four years old, but since I was so young, I began to mourn him as I grew up. I tried to live my life hoping to be the only person with a disease that didn’t have cancer or something like that.
Mary added that funkoni anemia didn’t stop her from doing normal things every day, but she said it made her think about how long she would live.
Mary explained how she knew other patients who had contracted some form of cancer several times, but had escaped a tragic early death.
I know people in their 20s and 30s who have had different cancers and whose lives have been taken care of by the hospital, Mary said.
It’s very difficult to deal with spiritually, and it pays off. I began to wonder what it would mean to me to do something with my life if it ended like this.
Mary, 28 years old, experienced the doctors’ life expectancy after she was born with Fanconi’s anemia. (Photo: Mary Beth Johnson/Metro.co.uk)
I did everything I could to be one of the lucky ones. I check myself every week for signs of cancer and regularly take part in preventive medical checks.
But as I grew up, I began to realize that I love this life and I can’t die now. I know I’m probably gonna die of Funkoni’s anemia, but I’m doing my best to live as long as I can.
At the age of 20, the daring Maria decided to take a more positive approach to life and promised to ignore the dark expectations of the doctors. She began erasing the seven videos she had made for her funeral and entered into a long relationship with her 27-year-old husband, a computer technician, Ben.
The couple married in July 2014 and spent the last three years overcoming fertility issues to start a family. They are currently following the IVF procedure and are also considering adopting it.
Mary has also joined the board of the Fanconi Anemia Research Foundation and speaks in her spare time to provide support and advice.
Mary, 28, with her husband Ben 27. (Photo: Mary Beth Johnson/Metro.co.uk)
Mary said: We’re trying to have children and I’m determined to see them grow up. I don’t live in the expectation of dying young, I live very aggressively.
Many people live with the mentality that they are waiting for the next person or something goes wrong.
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