This is my SMA story for August
My name is Monika Lemeshonok, I was born on January 27. 1986 in Belarus, city Mogilev. I was born completely healthy child and like all the children started walking at the age of 1 year, I could stand near the crib and walk when I was hold the hand, I was a very active child. But a few months, my mother began to notice how my legs began to weaken when I rested in a chair. My family showed me to a neurologist in the Minsk hospital. At the age of 1.5 years I was diagnosed with SMA type 2 (Spinal Muscular Atrophy), which was later confirmed by genetic DNA analysis. It is a terrible disease affects nerve cells in the upper part of the spinal cord that results in atrophy of the leg muscles and back and then to the loss of movement completely, the person ceases to walk and move.
But despite my disease and physical difficulties from him since childhood, my mother told me that you need to believe in miracles, live and enjoy life. And I've always believed that in one day will happen miracle and I will cure and be able to walk.
I have always admired the world and from an early age loved to draw. At first I was drawing pencils and pens cartoons heroes and then I liked to draw and paint, I painted all around. I started with the teachers of painting in art school.
From a childhood, I gave my personal exhibitions of paintings in many cities in my country and abroad, and help me in this, my mother. Many professionals and art lovers appreciate the artwork on my art exhibition; my works are in private collections in Europe, Asia and America. On one of my exhibitions have helped to me contact with famous professor and neurologist from Moscow Leonora Grinio, who was engaged in embryonic transplant of fetal tissue for people with neuromuscular diseases. The first time I got to her for treatment in 1999 at age 13, where I was made embryonic transplantation of fetal tissue using an injection under the skin. Treatment by Professor L.Grinio was a real miracle for me - I realized that I have a great chance on the way to a dream to be healthy.
I was treated by L.Grinio embryonic fetal cells from 1999 until 2003. In 2004, my professor Leonora Grinio introduced me to academician of the Russian Federation Gennady Suhih- Director of Institute Biological Medicine. And from 2004 to 2011 at the Moscow Institute of Biological Medicine I conducted transplantation of embryonic stem cells into muscle. After this treatment I got stronger muscles of the thighs, my weight began to increase, I do not get sick colds and viral diseases now never, I have always strong energy.
Thanks to this treatment in 2009 I graduated from the State University in my city, specialty Fine Arts, received Excellent diploma.
Another significant event in my life was to get acquainted with the great sculptor and artist Zurab Tsereteli - the first time in June 2003. Zurab personally invited me to their workshops on Tverskaya, the second time in 2008, I was invited to a master class in painting at the Zurab Tsereteli in Moscow on Prechistenka Street in his personal gallery.
I continue to enjoy life and now I have always a lot of inspiration and every day I paint artworks with new strength and believe in a good future.
In 2011 year I finished treatment of stem cells in Moscow, because my body has become stronger and my professor L.Grinio finished medical activities due to illness. At the time she told me about gene therapy - treatment which in the future will treat people with SMA and maybe even cure them completely. Then I did not know which country to seek this treatment, I had no contacts of doctors and clinics. But in 2014 year I saw an article on the internet about what to Nationwide Children's Hospital in Columbus, Ohio began the first phase of clinical trials of gene therapy for children with SMA type 1, which has so far been successful. I wrote message on the further conduct of gene therapy (Avexis) to Jill Jarecki - research director at Families of Spinal Muscular Atrophy (FSMA) and she said that within in three years is planning to conduct clinical trials of gene therapy for people with type 2 SMA.
In first half 2017 I wrote to neurologist John Kissel in Wexner Medical Center (Columbus, Ohio) about future planning participating in clinical trial of Gene Therapy (Avexis) and about me. He is promised that he would put my name and my contacts in the database to participate in these clinical trials in the future. It is was very happy news for me. I look forward and I hope that in the near future I will be able to be included on the clinical trials of gene therapy, because I believe in a miracle that the dream of my life has finally come true.
From October 2016 I got of medical examination and treatment every years in Italy clinic Nigrisoli (Bologna) at the Doctor M.Villanova.
