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Nazar Semeniuk, 7 years old, Klippel–Trеnaunay syndrome

February 6, 2016, 18:20 3729 Author: Alina Senyuk, translated by Mariya Onishchenko www.deti.zp.ua Fundraising is closed! In July this year, Nazar, along with her mother sent to Germany. German Fund has agreed to help the boy to undergo treatment.

Nazar Semeniuk, born May 28, 2008 years old

Diagnosis: Klippel–Trenaunay–Weber syndrome.

News about the treatment Nazar Semeniuk

Inquiries from German clinic: page 1, page 2, page 3, page 4, page 5, page 6, page 7, page 8.

Extract: page 1, page 2, page 3, page 4.

How to help?

Contact Information

The report on donations received

ATTENTION! AS AT 10/08/2015 city: Fundraising closed!!

In July this year, Nazar, along with her mother sent to Germany. German Fund has agreed to help the boy to undergo treatment.

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As the saying goes: "Neither joy nor sorrow can be measured in words". Joy is when your child grows and learns. Sorrow is when he learns that he is not like everyone else!

Nazar often asks me about when his foot will shrink to normal, when the port wine stains on his skin will fade, and when he won't have to wear bandages at night and a compression garment every day.

But the question of "Why I was born this way?", unfortunately, I cannot answer.

It isn't right to say that our lives are unhappy. In fact, we use bandages and compression garments in some way or another to fight against this condition. Nazar started to understand his disadvantages very early, but I try to translate them into benefits.

Recently, he complained that his big foot hindered his swimming during swimming lessons. (As a 7-year-old, he has a size 40 foot, and in the whole volume, size 43 [like a grown man]!). I replied that this is his advantage over other swimmers: "You'll have to win first place in a swimming!" And this works!

My long-awaited son was born May 28, 2008. With great happiness, I took my baby into my arms. Immediately, I had a question: "Lord, what ...?" The doctors said that my child might live a day, a month, or perhaps a year ... Then I realized it was not what He sent, but why. For some purpose, God sent me a trial. I must not rest my hands; I must try to save my baby.

Nazar has congenital Klippel–Trenaunay–Weber syndrome. When he was two months old, he had a bout with intestinal bleeding. At 4 months old, bleeding started again, but it would not stop. Local doctors could do nothing to help, leaving my baby slowly dying in my arms.

Thankfully, the chief surgeon advised that we not waste precious time trying a hospital in Kiev. So I flew with my baby to the children's clinical hospital in Moscow. There, doctors helped little Nazar: he stopped losing blood, but sometimes bleeding recurred. Then, thanks to the help of many donors, we went to Hamburg, Germany, where the bleeding problem was solved. But there is no cure, and Nazar could lose his leg.

In January 2013, Nazar was examined at the German clinic Foldi and given sclerotherapy to close malformed veins. A regimen of lymphatic drainage massage and bandaging was prescribed. We have kept this up for over 3 years. Now it is necessary to have orthopedic surgery. In July 2016, Nazar will undergo a complex operation to remove bony growths in the area of the toes of his left foot, and to insert a plate to align his foot along its length. (Surgery to remove the plate is expected after two years.) This year, we need 7700 euros for the first orthopedic surgery We are doing everything in order for Nazar to become a full-fledged child, He engages in Wushu (martial arts), swimming, and music (piano lessons). He can grow to be fully developed, only he needs help. It is necessary to save his leg and give him the opportunity to live on.

I'm trying to earn money for Nazar to have normal development, but

7700 euros (222000 UAH) is huge for me. Therefore, I ask you to help us. Without your help we cannot cope. -- Elena Semeniuk, mother of Nazar.

The family lives in Zaporozhye, Ukraine.

Elena’s Phonenumbers: 067 435 48 44




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