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Iryna Kolesnikova - Spinal muscular atrophy, Werdnig-Hoffman disease

December 22, 2011, 13:30 15740 Author: Yana Sasina, translated by Daria Sukach www.deti.zp.ua Iryna has risen a sum of money enough for medical examination at one of the specialized Russian orthopedic clinics (but not enough for Israel). We will surely inform you about results. Thanks to all who donated to Iryna!

Iryna Kolesnikova, born in 1991

Diagnosis: Spinal muscle atrophy, Werdnig-Hoffman disease

Medical report and the invitation for the examination

Iryna Kolesnikova’s up-to-date treatment news

How to help

The reports of the donations received

The telephone numbers of the parents and volunteers

A chance to sit without pain, to breathe without difficulty and to study – this is the greatest dream of twenty-year-old Iryna Kolesnikova from a little Ukrainian town of Melitopol. Although Iryna’s severe spine pathology can be corrected by Israeli doctors, it’s difficult to find the essential sum of money for it.

Werdning-Hoffman disease is a severe physical condition causing a progressive curvature of the spine and multiple internal organ dysfunctions. Since this physical disorder is progressive, it’s vitally important for Iryna to undergo surgery. The girl’s condition is getting worse and it’s getting more and more difficult for her to communicate with the surrounding world: to attend her classes at the university, to enjoy her hobbies and believe in herself.

Iryna was diagnosed with spinal muscular atrophy at the age of two. As a result, her future outlook was not very bright. Even though she seemed to be a healthy child, she could not walk on her own.

Iryna as a child

“Gradually my spine shape started to change. I was hunching up to the right more and more, so I had to use a little pillow or anything else to support my right side.

The time was slowly going by and I was homeschooling. My parents also got me engaged in various children’s amateur clubs. Thanks to my parents I was growing as a very communicative person. They brought me up in a way that made me feel the same as other kids. There were no single moments of mercy or any talks about life being unfair to me. And that’s why I always got confused when some adults would call me “a poor girl” or when some children consider me different from them”.

When Iryna turned ten years old, her condition started noticeably worsening. Her spine dramatically curved because of the weakened muscles and as a result it was difficult to support her back. Iryna developed a severe scoliosis, as well as lung and heart problems during the last ten years.

Iryna Kolesnikova: “For a long time ago I’ve accepted the fact that in this life I will never know what it feels like to walk on my own.”

Despite all her challenges, Iryna did not lose her spirit. She entered the daily department of the “Ukraine” University. Her major subject is “social work”. It’s extremely difficult for her to sit at her classes, let alone writing down lectures. She suffers from back and waist aches. “You must be asking me now why I’ve entered the daily department with my complicated health condition. Well, the truth to be told, my health condition allows me nothing. But, I can’t bear the idea of staying within four walls. I’ve got used to the fact that there are no easy accomplishments in my life and I have to overcome many obstacles to reach my goals. I would never achieve anything without my parents’ support. I’m fortunate with my parents. My mom always cheers me up and inspires me with a desire to live when I go through my weak moments”.

However, Iryna’s dark tunnel got a ray of hope recently. Surfing the internet she found a girl with the same diagnosis who underwent surgery in a Finish clinic. “I saw two pictures: before and after the surgery. No words can describe what I felt at that moment. I saw what I always silently dreamt about since I realized that my condition was disfiguring my body from year to year”.

Without a moment’s hesitation Iryna sent some pictures of her back to the Finish clinic. She was soon invited for an examination. It emptied her parents’ budget and made them sink into debt. And to the girl’s great disappointment, the spirometry tests (lungs functions tests) showed that her respiratory organs cannot withstand anesthesia (that means Iryna’s lungs would not be able to function independently without an artificial respiration device). The doctor firmly refused to risk his patient’s life. “All the hopes I woke up with every day since I found out about the opportunity to make my life complete were dashed”.

As soon as Iryna came back home, she sent off her documents to the Israeli Shaare Zedek Medical Center. This clinic is specialized in treating patients like Iryna. After the doctors reviewed Iryna’s medical documents, they concluded that her case was not totally hopeless. They are ready to perform a surgery on Iryna. However, such complicated surgeries are quite expensive. In the course of the surgery the doctors will place a metal construction around Iryna’s spine that will strengthen and support her back. This surgery requires 42,000 euros (55, 227 US dollars). Before the surgery takes place, Iryna has to take examination that costs 3,000 US dollars. The sad thing is that Iryna’s family doesn’t have such money.

“I’m appealing for help to your charity foundation. Publish my request to your website, please. I’m asking for help because it’s my last chance – a chance to improve my health and become more independent. The surgery will help me to sit longer and breathe easier and I’ll finally get an opportunity to fulfill myself professionally. In spite of my beautician’s skills, it’s physically challenging for me to do anything. For a long time I’ve accepted the fact that in this life I will never know what it feels like to walk on my own. Honestly speaking, I hate to complain and tell anyone what hurts me. The only person who knows all my sorrows is my mom. Believe me, it’s really hard to live with my kind of back. If there is anyone who’d be able to help me, I’ll be deeply grateful”.

For further information please contact the volunteers of “The Happy Child” Foundation

Iryna lives in the town of Melitopol (the Zaporizhzhya region).

The telephone number of Iryna’s mother Liliya - +38(097)268 30 50

Details for transferring your donations for Iryna Kolesnikova:

(Please let the Foundation members know about your donations)

The bank details for the donations in US dollars:

Beneficiary: Kolesnikova Liliya

Account: № 4405 8850 1864 7096

Bank of beneficiary: Privatbank, Dnepropetrovsk, Ukraine

Swift code: PBANUA2X

INTERMEDIARY BANK: JP MORGAN CHASE BANK CHASE METROTECH CENTER 7TH FLOOR BROOKLYN NY 11245 USA

Swift code: CHASUS33

CORRESPONDENT ACCOUNT: 0011000080

You can help by using convenient ways of donation (PayPal, MoneyGram, Western Union, Webmoney, etc.)

Reports of Donations Received:

(December 2011):

Raised: 2,385 US dollars

Happy Child foundation - effective help to the most needy children of the Zaporozhye region, Ukraine, since 2004

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