Newsletter, September 2009

Dear friends,

These days in our city one charity event or charity concert happens after another. This is surprising, especially because the financial crisis, according to analysts, is not going to leave us alone yet. Nevertheless, people are turning to us again and again with the question: “How can I help you?” If they cannot help with money, they offer to sit at the bedside of a child, to get tickets to a theater or a child's performance.

The most important thing is that not only people's attitude towards children with disabilities is changing, but also the self-perception of parents of such children does. The families begin to participate in outgoing activities, in which the healthy children take part as well. And at these events they experience less and less “pitiful stares”. A man in a wheelchair gradually ceases to be a rare sight on the streets, theaters, exhibitions, and restaurants. And our mothers, having knocked at the doors of different authorities for many years, learn now to defend the right of their child to a decent life calmly and reasonably, without creating scandals. These changes, of course, are just in their first stages, but we are glad about the active lives of our children and parents. They show themselves as creative and interesting persons, as a part of society which could give others an example of courage, patience, compassion and mutual aid. Most importantly, they feel their right to stand next to other people. This is often more important than any material values.

During the month, Hospice doctors and nurses visited all our families. The health conditions of most of the children are stable. Several new children have been taken in our charge. The appropriate medical and psychosocial support plans have been worked out for them.

In September, Tanya I. passed away. The girl came to us recently in serious condition. We express our heartfelt sorrow to this girl’s close ones and grieve with them.

Anya G. was delivered to the Research Institute of Oncology with a relapse. Anya G. underwent a serious bone marrow transplant one year ago. She had a no less difficult and painful period of recovery. The girl and her family courageously continue to fight against the disease. We hope very much that the health condition of Anya will stabilize soon, and she will be able to return home.

In September, two of our doctors – O.V. Ivanova and O.P. Ivanova – were being trained on the problem of clinical nutrition for the ill, including cancer patients.

Zhenya B. and Dima K., being treated at the Oncology Research Institute, were provided with infusors to administer IV solutions.

The family of Vanya K. was presented with a specialized promenade wheelchair. His relatives do their best to enable the child to spend more time in the fresh air. Now it will be more comfortable and easier, as the wheelchair is equipped with special holders, it folds conveniently and it is light enough the mother or grandmother could raise it. Most patients who needed such wheelchairs had been provided with them by Children's Hospice throughout this year.

It is a joy to observe how the lives of children and their families are changing when they receive modern means of rehabilitation. The actions which have demanded enormous efforts in time and strength for many years and even activities which used to be simply unfeasible are becoming possible even for fragile mothers of our patients by using wheelchairs, lifters and other devices. There is nothing more pleasant than to learn that a child has become able to be more often outdoors or even to drive by himself and unaccompanied by means of an electric wheelchair.

Psychosocial activities

In September the children as usual attended a variety of activities. Sports fans visited football and ice hockey matches. The boys were invited to attend all games of the St. Petersburg Ice Hockey Club SKA during the whole season. Those interested will have an opportunity to meet hockey players.

In the Museum of the Avant-garde a charity auction took place. In its first part our children could attend a master class on airbrushing. After that the auction was held. All collected funds will be used for fulfilling cherished dreams of seriously ill children.

In the Sports Palace "Jubileyny" an Ice Show "The Wizard of Oz" took place. We thank the Sports Palace management for so many donated tickets, and artists for the excellent show.

On 19th – 20th of September, city of Veliky Novgorod celebrated its 1150th anniversary and a group of our children and parents attended the City Day. The boys told us that the entire city was enveloped in festivities. Scenes from the history of His Majesty Lord Novgorod the Great, performances by singers and dance groups, fireworks – everyone was very pleased to have participated in this celebration. Ivan L. got so much carried away by stories about the old days that he asked his mother after the return to the city to take him to some museums. The children brought back a lot of impressions and photographs from the trip.

A delegation of the animation studio "YES!" has recently left for an animation festival in Kharkov city, Ukraine. Several children from Children’s Hospice went with them, including Roma D. We hope that the kids will have a good time there.

In this issue of our newsletter we tell you about our social educator Diana Kilchevskaya. Diana offers developing classes to children; she organizes various activities and helps parents deal with social problems. She is remarkably able to find contact with children, she can be as kind and gentle as she can be strict. Diana devotes herself to the children with all her heart. She constantly tries to invent something interesting for them, to find volunteers for interacting or tutoring. She takes a lot of time to work with parents. She directs them not only towards care for their child, but also towards his development, even if the state of health of a child would not allow him to achieve outstanding results, because there is nothing more destructive to the child's condition than boredom and frustration. Diana is not complacent about already-achieved success and continues to raise her professional level.

We are glad to share our news with you! We hope that what you have read touches both your heart and your soul. Please share this joy with your friends and pass this newsletter on to some of them. If any questions arise, don’t hesitate to contact us. We are always happy to hear from you.

See you in the next issue of our bulletin.

Yours faithfully,

Fr. Alexander Tkachenko, Children’s Hospice, September 2009.

Detski Hospis/Children’s Hospice.