I have a rare genetic disease, called Dyskeratosis Congenita, that affects 1 in a million. A lot of those who have it can enjoy life almost fully. But we all live with some fear, because at some unpredictable point, major organs in the body can fail with a short-term fatal prognosis. This is my case.
My ability to breathe started rapidly declining last year, and now I need oxygen support to breath even when I sleep. It’s hard to believe that a year ago I was dancing, biking and hiking in the mountains with my kids.
To survive, I need to undergo a sequential transplants of both lungs and bone marrow. Medical centers across Europe, including France, Norway, UK and Switzerland, have refused to do it because of its complexity and high risk. Luckily, one team in the University of Pittsburgh in the US has developed an innovative, FDA approved, protocol for people with my condition. They have already performed six operations, successfully increasing the patients’ life expectancy and quality of life. They are willing to accept me as their 7th patient, if I can make it there before it is too late. My operation would not only allow me to breathe normally again, but also cure my body of this disease, allowing me many years of life. It sounds like a miracle to me. The willingness of this team to break status quo through research gives me and my family hope―but also to the community of people affected by Dyskeratosis Congeneta.
I was born in Moscow in 1982, my father was Ethiopian and my mother was Russian. I went to school in Russia, studied Engineering in France and the USA and then moved to Norway with my wife. Until recently, my disability was almost invisible, allowing me to sustain an image of normality. But I’ve known since the age of 12, when I was diagnosed with bone marrow failure, that this day would come. My condition is now deteriorating quickly and I need to ask for your help.
I am really lucky and grateful that so far my life has been full of friendships, love and affection. Love and the feeling that I could give something to this world―to my family, to my friends, to my colleagues―has been my most powerful lifeline. Now I feel like I am becoming fully dependent on others, and the only way to reverse this is to get new lungs and new bone marrow. This is a risky endeavour, but I have no choice left and I must act quickly.
Because this is a relatively new procedure, my Norwegian state insurance has refused to cover the costs. Private European insurances have refused to pay for treatment in the US, which is the only place where the surgery is available. My only hope is to raise funds through crowdfunding and foundations.
Dyskeratosis Congenita is hereditary: I lost my mother to the same disease when I was 24. But if fifteen years ago there was no hope for treatment, now there is. Luckily, my kids do not have the defective gene. Living and seeing them grow and be there for them in their adulthood is now a dream. A dream for which I ask your help. Please, please donate what you can, and share this story with others. Even 10$ makes a difference. I would never be able to thank you enough. I would owe you my life and my dreams.