4 years Vick was diagnosed with “spinal muscular atrophy werdnig-Hoffmann”. In 7 years, Victoria was in a wheelchair. She couldn’t walk, but did not give up. Graduated from high school, then College. Married. Carried and gave birth to a healthy son despite the protests of the doctors. Now her biggest dream is to fix increasing deformation of the spine.
Vika and her husband Dima and son Maxim
- “Waiting for a lung transplant to play with my grandchildren at the ball”
- “The first 7 hours of operation we will get to the heart”
- The results of the drug denied – but the parents for the past 7 years fighting for her son’s life
- A strange chill in the heart, and unsubdued Elbrus
- In cystic fibrosis cannot afford to get sick, and Elena found cancer
Legs began to totter, weakened handles and back
Vika was born in the small Ukrainian town of Yellow Waters on the Yellow river. The mother of Vika, Elena, was only 18. “I was a healthy child the first 2 or 3 years. Then relatives noticed that I quickly began to get tired and ask for pens. I had changed my gait. It looks like a duck. Legs began to totter, weakened handles and back. I started to fall. The family has traveled with me all of Ukraine to understand what’s going on,” says Vic.
In Kiev, put the final diagnosis: spinal muscular atrophy werdnig-Hoffmann. This is a rare hereditary disease when weakened, and eventually stop working the muscles of the body. It is one of 6-10 thousand people. The reason is the mutation of the gene in the 5th chromosome. Carriers of the mutated gene, as it turned out, was my mom and dad Wiki.
The examination and treatment of the Wiki, leaving a lot of money, so parents are often away for work in Russia. My mother worked as a house painter-plasterer, dad – working on the site. She, of course, very wanted. Knew that will bring a lot of toys and sweets. Especially loved the halva in chocolate. Vick lived at the grandmother with the grandfather – my mom’s parents.
“Grandparents never treated me as disabled. Grandpa I do, probably from the age of five said: “I am at your wedding and walk your children into the hands hold,” recalls Vic. – My grandfather was a sailor. Incredibly kind people. Secretive I often ran to him. He was my friend, he was always fun. When I was little, he got up on all fours and, like a horse, took me on the back. And my grandmother was my mentor in life. And the other, of course. A strong woman. And very cook…”.
“So grown up and in a wheelchair”
Vick went to a regular kindergarten. However, native worth the incredible effort to get her there. Grandmother swept all the gardens of the city, but nobody wanted to take responsibility for a special child. In the end, Vick agreed to issue in a single garden.
“I went to kindergarten as a normal child. Moved from room to room, relying on items… But I was not offended or humiliated. I was a friend to all, and me were all friends,” says Vic.
She wanted to go to school and was waiting for the 1st of September. But in 7 years to go could not at all. On the school line the wick in the pretty pink dress with white bows in her hair brought in a wheelchair.
Doing it at home. The teachers came to her every day.
Vick was 8, when one morning the door of their apartment rang. The police asked for pictures of my mom… for identification.
Beautiful, affectionate, with good sense of humor, a great host and, at the same time, weak, falling under the influence, Elena was involved with a bad crowd, started drinking. With her husband, Vika’s dad, not mine. She was killed at age 26.
Vika for the first time saw cried grandpa. A strong man, a real man. Dad and grandma at the time was on earnings. Vika understood, but not fully realized what had happened. It seemed to her, Mama left. For a long time. It is not enough…
Dad soon created a new family. Wanted to take Vika to yourself, in the suburbs, but grandparents didn’t. “Since 8 years I am on my feet did not get up at all, – says Vika. The condition worsened. The body grew. The muscles were weak and not holding the spine. Appeared scoliosis. I moved only in a wheelchair. Somehow my grandmother rolled down the street, and I heard a comment from one boy: “So grown up and in a wheelchair”. I was greatly offended. To tears. Grandma reassured me. “Don’t pay attention! You are no different from other children. They just surprised that you moved to a wheelchair”, she said”.
And in the rain, and in sleet and snow drove in a pair
In adolescence do not pay attention to their features became more complex. “Teenage girls began to run on the first date, wear heels and makeup, and I was deprived of all this. Moreover, in the stroller, and all crooked with scoliosis. How can there be self-esteem? But somehow it survived this period. Lost weight, learned to paint, also wearing high heel shoes. And a little different look. Wanted to be beautiful to me even more attention,” laughs Vic.
A new shocking experience in her life occurred at age 15. Passed away grandfather. Unusual, adorable. Cancer. “It’s like I died, didn’t go out. Me does not interest him, nothing was pleasing. I had a real depression. Friends practically had to drag me out, so I came to. But you know what I noticed? When God takes things away from me, He is giving something in return. Lost my grandfather and in the same year she met her future husband Dima. He is also a real man,” says Vic.
After high school, she enrolled in the city’s only Institute of entrepreneurship “Strategy” for the specialty “Accounting and audit”. To school went every day by myself. In a wheelchair.
Dean went to meet him: at the Institute specifically for the Wiki made a ramp. All classes of her group were on the first floor.
For the year to the end of the wick had to be transferred to the Dnipropetrovsk University for distance learning. Institute in their town closed.
To get a job as an accountant upon graduation, Vick failed. There was no vacancies, no experience is not taken.
To cope with all the difficulties she, as before, helped grandma. She was always there. And around these last few years have been Dima. They met through common friends. Attention to each other paid immediately. But over time, she realized that the man on whom you can rely in any difficult situations. Reliable.
“And who do you allow to give birth?”
“What I noticed? On bikini eyes. Such living! In them – the spark, the fire that you want to keep warm. When they look, you know that this person lives one hundred percent. I saw the person. And soul. Her inner world is no less beautiful than her appearance. It was terrible: gone such a classy man! I had to quickly make a decision. Well, I accelerated what is now very happy”, – says Dima.
Offer Vick he did just. As he says, without unnecessary decorations – champagne doves and musicians. Just said about their feelings and asked: “are You ready to marry me?”. And I heard “Yes.” Their wedding accidentally coincided with the city day. The mayor presented them as a birthday gift and was invited on city celebrations.
“On holiday we met an elderly couple, they lived together for more than 50 years. I looked at these people, listening to their story and thought: “What they have done! That’s real love”. And then looked into the eyes of my wife and realized that we would have the same,” – says Dima.
The child wanted very much. Both. When Vic found out about the pregnancy, I was sure the baby gets here, everything will be fine. Family and friends felt happy for her. The doctors were in shock.
“During pregnancy I got sick, I came home to the doctor and says:
– Who gave you permission to give birth?
– Do I need this special permission? – I asked.
– Who of you will be held responsible?! You know that you can die from it? she cried.
I replied to her:
– This is my life. My choice.
When I stood on the account in female consultation, I was asked more than “cultural”:
– Are you sure you want to leave everything as it is and not take it back?
– No, I decided to leave as is. And I know it.
So I hinted at abortion,” says Vic.
Birth Vick was sent to Dnepropetrovsk – in the perinatal center. The case was extraordinary. The doctors were worried. Several times collected a consultation. To decide which anesthesia and how much to introduce to the mother and child during caesarean survived.
“When I started to move away from the anesthesia, remember that in front of me lined up all the doctors. They congratulated me:
– Vika, you’re done! You did it!
– Is the baby okay? – I asked.
– Yes! – answered me.
Stood next to Dima and also praised me. Then I heard cries Maxim… We came up with the name of the child,” says Vick.
Because of the scoliosis, all organs squeezed
Maxim is now 5 months. It weighs almost 8 pounds. To keep the baby Vick can only under mouse – when he sits back to her, and she leans on something. Only 5-10 minutes.
All the worries about the son took over Dima. He says that when he first took the baby in his hands, realized that in his life there is another significant person he will meet. He is now a dad. It’s his child and he will cherish it. And in the future will try to become not only a parent but also a friend. And will definitely help in difficult times. He grew up without a father. It was hard.
“That is true happiness. Imagine being born the same wonderful, living person, like my wife. Look into his eyes and realize that no one is dearer. Rejoice in every “yeah” “yeah”. Emotions overflow.
It happens, sometimes hard, but everyone goes through difficulties. At first with the fact that in some moments it was difficult… But when you know the value of a particular person in your life, when someone you really love, you can do anything,” says Dima.
“Now I really need surgery to correct the spine. My back really hurts because of the scoliosis. Breathe barely. One lung completely bent. With heart and blood vessel problems. Under the binding zone. During surgery, the spine strengthen titanium construction that keeps the back. Due to this, all bodies are taking the correct position, and an opportunity to breathe properly. It prolongs life,” says Vic.
The operation may be done in Moscow, in the Center of spine. But the operation is expensive. After the birth of Maxim Vicky’s husband was forced to leave work, he’s technically on leave for child care, but the employer pays nothing. In fact, the family lives on Vicino disability pension and children’s allowances. Grandmother, who raised Victoria, already 2 years dead.
Let’s help Vick, then her wonderful husband will be able to go to work and provide for his family and young son – finally sitting on my mom’s hands.
Go to the page collection at the Foundation’s website