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  • Anastasiya P.
  • Mihail S.

DECEMBER 2020

Dear friends, thank you for your support!
The magical Yule season is approaching. We all have the same hopes and wishes at the end of this year. But for the people we help, the words “hope”, “gift”, “happiness” still have a deeper and more important meaning.

In November, we have helped the family of Eva Grabovskaya, 3 years old, Kemerovo, stage 4 neuroblastoma, to pay for housing during her treatment in Greifswald. We have supported 3 families, whose members have medical diagnoses, in a difficult situation.

In December, our support is expected by:

Polina Kozenkova, 9 years old, Ukraine, Kharkiv region. Diagnosis: spinal muscular atrophy (SMA) and grade 4 neuromuscular scoliosis.
The SMA has weakened the muscles throughout her body, she cannot walk or even stand on her own. From the age of 3, her back began to deform. All day long Polina has to wear a tight corset to support her spine. However, the disease is progressing and now the girl has severe scoliosis with a lateral arch of more than 90 degrees. This causes serious breathing problems, impaired blood circulation, heart displacements. Polina requires an urgent surgery to correct the scoliosis. Taking into account the severity of the underlying disease, the doctors have recommended installing a magnetic structure MAGEC System in Germany. This design can be adjusted without surgery as the child grows, by expanding the structure using a special magnetic device. The procedure has to beperformed 2-3 times per year in a clinic.
The sooner the operation is done, the more chances are there to save Polina. Such surgeries are not performed in Ukraine. The German clinic in the city of Bochum is ready to accept the girl. The price tag is EUR 70,500. At the moment, it remains to collect EUR 50,500.
Leila Bakhtybaeva, 3 y.o., Kazakhstan.
Diagnosis: juvenile myelomonocytic leukemia.
At the age of seven months, the girl was diagnosed with a terrible disease – juvenile myelomonocytic leukemia, blood and bone marrow cancer. Since then, the struggle for the child’s life has not stopped for a month. Leyla has undergone stem cell transplants twice: both times the transplant was rejected. The girl suffers from concomitant diseases. Kazakh doctors recommended the treatment abroad. Now the only hope is the third transplant, in a Turkish clinic Medipol Mega. The cost of the treatment is 93,000 euros. Parents are borrowing and fund-raising. It remains to collect EUR 82,000 euros.
Kira Kurulenko, 7 years old, Belarus.
Diagnosis: stadium 4 retroperitoneal neuroblastoma, relapse.
Kira was diagnosed in 2016, in the age of 3. This was followed by a severe, aggressive treatment: Kira underwent 6 blocks of chemotherapy, an operation to remove a tumor, and bone marrow transplantation, that had heavy consequences.
Owing to the help of caring people, they have managed to go timely to Greifswald clinics, Germany, for a treatment with antibodies (immunotherapy).
But there was a relapse in April of this year.
Now Kira needs to undergo transplantation, immunotherapy and other important treatments. Kira gave a good response to the treatment she has already received, and she has every chance for a full recovery. A clinic in Barcelona is ready to accept the girl. The cost of treatment is EUR 307,000. The family has managed to collect € 113,000 on their own. Kira, like any child, has her own wishes. She wishes simple things: to go to school with other children and celebrate her birthday at home with family and friends.
For the wishes to become true, she urgently needs to start the treatment. And for this they urgently need about 200,000 euros.

Almost all parents of our care-receives are heroic people! They withstand the trials that a normal person in peacetime can hardly imagine. To survive, they need our support.
But there are also the parents who, despite being immersed in their difficult situation, can think of others and make better the world around.

A letter from Larisa Sanyukevich, founder and head of the Social Rehabilitation Center for Children with Cerebral Palsy in Grodno, Belarus, mother of wonderful boy twins, Sasha and Pasha, 10 years old, who have been diagnosed with cerebral palsy since birth:
«Hi Alina. There is no time to check the mail, I see already two letters from you.
The rehabilitation course has already been done at the institution. And before doing the course, it was necessary to clean up the premises after the renovation, remove all the construction waste, so I was all the time there to fix everyting. Before the lunchtime, I am with children at home, cooking, washing, cleaning. After the lunch, while the children sleep, I am at the institution cleaning up till the evening. I crawl home afterwards.
Well, thanks to the Lord, I’ve managed to put everything in order. Fortunately, there was always someone helping me with this cleaning.
The rehabilitation was a success, the rehabilitation therapist has left us already two days ago. Now I recuperate from this. There is still a lot of work left in the institution, but most of it has already been done.
Alina, you cannot imagine how much energy and health it takes from me. Yet without these tendance I would have gone crazy. So I do not know what is better. Besides, there is nowhere to rehabilitate the children. So you want it or not, there is no other way, you need to move on …
What do we have to decide about the wheelchairs?
If the question is if we need them or not, then yes, of course, we need them very much. The boys are without anything, there is no single device for them at home to exercise. They sit in pillows, there is nothing to verticalize them either. Everything they have was bought when they were 4 years old. Now they are 10 years old, and everything has become small for them. I brought all this to the institution, so the others will use it. There is a disaster with all these necessary things, my back is destroyed to the last limit, this makes a problem with moving them, washing, all this. You can write a book on this topic …
Good night, or good morning. Hugs to you.
»

You can contact Larisa and give her a helping hand per email: ruka_pomoshchi_by@mail.ru Or you can ask her for help. I am sure that we can support each other!
We have found a special stroller that suits her children. It is quite sophisticated and expensive: EUR 11,660. A sponsor, who has been recurrently taking over the financing of the needs of our care-receivers, has provided the support this time too.
However, we still have 3 open applications for medical equipment: a wheelchair for Zakhar Kalinin, 13 years old, Pavlovsky Posad, exercise bicycles for Ilona Glamozda, 5 years old, from Minsk, and Fedya Emelyanov, 5 years old, from Izhevsk. All together, this amounts to about EUR 4,000.

Perhaps some of you want to be like Santa Claus and bring joy to these families.
Do not ponder this long!

HURRY TO DO GOOD!
I wish health to you all! Take care of yourself and your loved ones!
I embrace you heartily,
Yours Alina Titova

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