Windy City Angels - Bank of America Chicago Marathon
PLEASE SPONSOR
Anna Kyrychenko/ GLORY TO UKRAINE!
Amount Raised
$300.00
Fundraising Goal $2,500.00

My Message

What do you know about the war? I do not know when the war will end, especially since we are unable to explain why it began. The great Ukrainian nation has become hostage to the painful, insatiable thirst for power of one man. At one point, life was divided into before and after February 24. The worst was that night, three months ago. When an alarm phone rang at night when I woke the children with the words “Get up quickly! We are being bombed! ” The eldest daughter Diana was extremely collected, reacted instantly, gathered herself and her youngest sister Alisa, and grabbed an anxious suitcase. Alisa, a happy little daughter, was sleepy but happy as always. Diana tried to pull on a warm sweater, thinking I was frozen. I ran from corner to corner, trying to figure out how it was possible for my cousin to shoot me. Then it was not scary. There was and remains universal anger and hatred for the aggressor country. Three months have gone down in human history. Three months since the birth of the new nation.

Before the war, our Ukrainian community of people with Angelman syndrome had just begun its activities. Step by step we searched for our families, registered them, created a website, and learned to communicate with each other. Parents' sentiments were divided into two categories: those who were completely desperate and had no hope for a better future for their children, and those who sincerely believed that such a desirable and long-awaited treatment would soon be found. It is very difficult to unite people who have different living conditions, different personalities, levels of education, and upbringing. It was even harder to find medical facilities and doctors who understood how to identify, register and accompany our children. The hardest part was finding the right path to Europe and the United States, where there are experienced patient organizations that are able to support, advise and hope.

I am always asked the exact number of people with Angelman syndrome. A difficult, very difficult question. When I started working with families, I thought it was 60 families. When the war broke out, it turned out that many families did not have a confirmed diagnosis, only clinical manifestations, some do not see the difference between Angelman and Prader Willy syndrome, the main thing is that chromosome 15 was damaged. Some families do not get in touch at all for reasons I do not understand. On the contrary, there are those families that I had no idea about, and they found themselves.

The story of every family is a tragedy. Our children who spent the night in the bomb shelters are horrible. Women who are forced to flee bombs with a sick child who has an epileptic seizure… Now we can safely say that children with Angelman syndrome do not always laugh. We refute this scientific fact. When the sirens howl, they cry. When they hear explosions, they tremble and go to the bathroom, thinking that they can hide there. In three months, our children have become adults for life. Many children went with their parents to other countries. Frankly, this is a tragedy for us. Our children have nowhere to go. Wherever they are, they are refugees. In Ukraine, they are at home. We dream of creating comfortable conditions for them in their native country. We want our actions to have a future. We want our children to have access to clinical trials, quality diagnosis, treatment, education, and rehabilitation. We will definitely win. Glory to Ukraine! Glory to heroes!

Event:
Bank of America Chicago Marathon

My Team

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My Supporters (2)

Kitty Murphy left a message
May 31, 2022 9:27 AM
Anna, we couldn't be more proud or honored to have you join the Windy City Angels Chicago Marathon team! Your brave love and protection for AS individuals in Ukraine is inspiring! You are an inspiration to us all! Thank you for your strong faith in their future! We love and appreciate you so much!
Angelman Syndrome Foundation donated $300.00
May 31, 2022 12:00 AM