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Diana Vikhlyaeva, born in 2003 - spastic paraparesis of the lower limbs

February 17, 2014, 12:30 4571 Author: Maxim Sherbina, translated by Oksana Nikolenko www.deti.zp.ua The fund-raising campaign is closed. Thanks to your donations, we could finance Diana’s trip to Saint Petersburg and her checkup there

Diana Vikhlyaeva, born on 02.11.2003

Diagnosis: Spastic paraparesis of the lower limbs.

News about the treatment of Diana Vikhlyaeva

Medical report: page 1 page 2

The treatment bill

The treatment invitation

How to help

The Reports of Donations Received and Spent

Contacts

ATTENTION (21.10.2014).:

The fund-raising campaign is closed. Thanks to your donations, we could finance Diana’s trip to Saint Petersburg and her checkup there.

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Diana, who wants to dance

My meeting with Diana Vikhlyaeva and her mother Angelica was rescheduled three times. Finally we could arrange our talk on New Year’s Eve at the holiday theater performance in the "Planet of happiness" rehabilitation center. By the way, Angelica Vikhlyaeva is one of the initiators and directors of this center. Regional rehabilitation centers refuse to take care for such children like Diana who is not able to move independently. Therefore, parents have to do everything possible and impossible, so Diana and children with similar problems and needs can grow and develop like their peers.

And now it is the time for impossible - to start walking. Diana needs a number of operations in Russia, which require 40,000 hryvnays or 4,480 US dollars. As a mom of a special child, Angelica used to cope with the impossible, and unsupportable, and unrealistic. But now she is asking for help. The period for which it is necessary to collect this impressive amount of money for a typical family in Ukraine is short – the deadline comes on May 20th, 2014.

Mom and daughter

The "Planet of happiness" center found its orbit in an ordinary apartment in a dilapidated two-story building in the center of Kommunarskiy district - across the street from the former "Kosmos" cinema. As agreed, I knock on the window. As one of the parents comes to open the door, I notice the social taxi from the "Happy Child" charity foundation, intended for children and young people with special needs. A number of Christmas characters get out of the taxi. Here you can see snowflakes, bunnies, and a Little Red Riding Hood, as well as nicely-dressed kids. Someone can walk on his own, leaning on the arm of the parent, someone is carried in arms. All of them – are the inhabitants of the "Planet of happiness" who came to the holiday performance.

Together we climb up the creaky wooden stairs. It is quite small inside the center. A jaunty Snow Maiden, a little shy Santa Claus, a grimy Kikimora-Witch, five parents, a dozen of kids of all ages, a couple of journalists, representatives of one of the charities of the region - it is unclear how they all can actually fit in this small two-bedroom apartment.

Diana is a cheerful (a very accurate epithet!), dark-haired girl with a fashionable hairstyle. She loves parties. Her mother Angelica manages the holiday play. I notice immediately how alike mom and daughter look like.

- Diana is a very kind and happy child, but with a bee in the bonnet - Angelica tells me with a smile, emerging for a moment from the maelstrom of the Christmas party . – You can easily buy her for "help me". Just pronounce this magic "help", she will do everything you ask her...

But we can’t talk in detail - one of the kids recognized his mother in the role of a witch and rolled a real hysteria. All the Planet members try to soothe a weeping kid. We find some free time at the end of the performance. With the amicable promises of children to be neat and obey their parents, Angelica and I have a sit in a small kitchenette. An energetic mother is short of time –Diana’s day is usually scheduled, so we spoke concisely and substantially.

White negligence

The first thing I ask Angelica is usual in such cases- "How did it happen? Is this Diana's birth trauma?" And I get an unexpected response:

- Nobody clearly explained anything to us about the diagnosis. At birth all was ok, but we were kept in the hospital for 12 days. Diana was laid on a drip without any explanation for five days. Only when we came home from the hospital and deployed the child we saw - her spine was arched, and she had a huge, gray-brown-crimson bruise on her back. As if the result of a blow or an injury. Over the next few years the bruise changed its color.

Those who were guilty in this story were never found. Doctors deny their involvement. What’s more, discharging from the hospital, Angelica signed a paper which stated that the baby was completely healthy. Moreover, none of the experts whom the Vikhlyaevs asked for help offered any way out of the situation. It was not clear what to do with a damaged spine, what treatment to pass, whom to ask.

- Up to two years, we were never diagnosed with cerebral palsy; we were told that we had just a lazy child. And the parents were lazy - Angelica continues to tell us this shocking, but, alas common story of Ukrainian health care system. - Only one doctor in Kiev secretly told us that the girl was actually injured by doctors.

“Cerebral palsy would be better”

This terrible phrase Angelica says due to the fact that if her daughter had been diagnosed with cerebral palsy right away, it would have saved them a lot of time, so the rehabilitation and treatment could have begun much earlier. But doctors still can not come to the same conclusion – there are as many experts, as many opinions.

As soon as Diana’s parents realized that their daughter’s situation was more than serious, they immediately started the process of rescuing their baby. Diana was treated in Odessa and Kiev rehabilitation centers. She was repeatedly examined in the Kiev Institute of Problems of Pain and International Rehabilitation Clinic in Truskavets. The family attended the Ukrainian Research Institute of Prosthetics in Kharkov. Diana was also treated in a number of hospitals in Zaporizhzhia. And that's not counting regular narrowly focused treatments, manual therapies, therapeutic physical trainings, massages, joint elaboration, training on specialized simulators.

Such a broad and intense program of treatment gave results. Diana became a very kind and open child who loves reading and music. Nevertheless, the main Diana’s dream - not only walk, but also dance, remains unfulfilled.

Recently she has got a chance...

Chance with a guarantee

- Can you ensure us that the child will somehow walk? At least with a cane or walker? - This is the first question Angelica asked doctors of the Turner specialized orthopedic institute in St. Petersburg. In November 2013 the Vikhlyaevs managed to get the consultation with specialists of the center. - They said they would solve all the problems that interfere the child to walk, but our task is to teach her that. Just imagine, for 10 years signals for walking haven’t been reported in the brain. Now these signals must be turned on. We’re practising it now, but without the ability to do full steps we have a little use from such exercises.

In the doorway of the kitchen Diana’s dad appears with a girl in his arms: the Vikhlyaevs are in a hurry - as I said, the day of Diana is scheduled by the minute. Besides, now it is necessary to prepare the girl for the May operations.

Sergey, Diana's father, works in "Radiopribor" factory. Angelica tries to help not only her own daughter but other children in similar situations. She received a second degree in rehabilitation, and now as a volunteer she works with young dwellers of the "Planet of happiness" center. Public works and factory "Radiopribor" are not something which will allow Diana’s parents to collect the necessary amount of money for the operation in 4 months. All their funds were spent on the first trip.

So now the Vikhlyaevs family are appealing to all kind people – support, Diana please!

- Help my wonderful girl to fulfill the dream of her life – asks us Angelica. – I want to show Diana that dreams come true, and life does not consist of tears, pain and unfulfilled hopes.

This family lives in Zaporizhzhia.

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




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