Charitable foundation

Kateryna Yarovenko

Amount raised
65.69% 0 / 49265 UAH
UAH 75,000.00
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Diagnosis
Autoimmune encephalitis caused by anti-Hu-D antibodies to neuroblastoma, with progressive cerebellar atrophy
Date of birth
born 07.08.2015
Place of residence
Odesa

12.03.2026
Thank you so much to everyone who has been helping Katia beat her illness since June 2021! Everything is very hard, new problems appear, the treatment changes, but Katia and her mother do not give up and keep fighting. It is very hard to be treated in a foreign country with no family nearby. At her mother’s request we are opening a third fundraiser for the girl’s rehabilitation. There is no one else to help them. 
Katia’s mother’s phone broke, the screen is smashed, so the news comes late.
"Katia has been feeling unwell all these days. There will be a consultation with the neurologist soon, I will discuss all the symptoms with her. Katiusha is continuing her rehabilitation. An individual remedial lesson 1 time a week costs 25 €. That makes 100-125 € a month. And 15 € for 1 extra lesson in a small group for all-round development: motor skills, exercises for the brain, memory and so on. That makes 60-75 € a month. Altogether it comes to 160-200 € a month".
 

08.04.2024 

Our deepest thanks for your help! Since August 2023 Katia has been having very severe seizures that last for several weeks. Her anticonvulsant was changed, then the dose had to be changed again. The seizures are very strong; she takes a long time to recover afterwards, has problems with memory and learning, and her motor skills suffer. 

The doctors called me in and said that although the treatment had given positive results, it had not helped. The antibodies keep being produced and attack the cerebellum. They said they do not know how much time she has. The prognosis is poor. They thought about what could be done and decided to offer an experimental bone marrow transplant. If we agree, it will be Katia’s third transplant. It is a very risky procedure in itself, and in this case, on top of the strongest medicines used in a transplant, they would  add very powerful drugs whose effect on a child cannot be predicted. It is an experimental transplant that has never been done on children. It has been done only for 2 adults  with a different diagnosis. The doctors warned of a very high risk of death. They said that if the child survives, the options are these: she may get worse, the transplant may not help and everything will stay the same, and there is a small chance that she will get better. It is very hard for me to write such things. And even harder to think about them. The doctors said the decision must be made as soon as possible and gave me 2 weeks to think. Then they must get approval for this dangerous procedure from a board covering all of Catalonia.
The 2 weeks in which I was to make the decision have already passed. But I asked for extra time to wait for the results of the examinations and, if the child’s condition allows, I want a second opinion. As the doctors described the situation to me, the risk of death is very high, the outcome unpredictable; they cannot give the chances of a good outcome, because this has not been done before and so there are no statistics. Besides, the child is already worn out and weakened by previous heavy treatments, transplants, courses of antibodies, epileptic seizures and complications after infections. This year alone she has already had 3 ear infections with a temperature of 40 and antibiotics. She is also seen by a nephrologist, because there are questions about the kidney on the side where the adrenal gland was removed. 
The hospital was to design rehabilitation lessons for us. They said the work had to start at once and continue without a break.  But the programme was never drawn up. For a long time now (since February 2022, with breaks for treatment and illness) we have been doing the rehabilitation ourselves, as remedial and developmental lessons for brain work and learning to read. After each series of seizures all her skills regress, her motor skills and coordination get worse. And all of it has to be restored. Her neurologist concluded that she needs remedial lessons in her own language. We go to a wonderful teacher who specialises in such children. And it is also very important that Katia learns to read and write well. So that she can communicate with the people around her. Because right now she is in an information vacuum. There is so much I want to tell her, and so much she wants to know. She wants to talk with children her age. I hope that reading will make this possible. Learning is hard for her because of the damaged cerebellum, but she tries. We are very grateful for the donations to the account of the Little Bee Foundation. On our own we could not pay for the lessons. The lessons cost about 220 euros a month, depending on the number of weeks. As soon as Katia feels well enough we go to the lessons in any weather. It is hard, but the result is very noticeable. The doctors themselves say she needs lessons all the time, it is like rehabilitation after a stroke. Stop, and it will be far harder to restore everything afterwards.
Yours sincerely, Katia’s mother!

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Friends, I have to ask you for help. Our daughter Katia urgently needs an examination abroad. Today the child has nausea and vomiting that have lasted more than a year, impaired coordination of movement and of the visual fields, and atrophy of the cerebellum.

Three years ago (in 2018) she was given a terrible diagnosis: stage 4 neuroblastoma with metastases in the bone marrow. We went through hard treatment: 8 blocks of chemotherapy, 2 bone marrow transplants, an operation to remove the tumour and the adrenal gland, many anaesthetics, subclavian catheter placements, blood and platelet transfusions, and at last we reached remission. In January 2020 Katia began to feel sick and vomit after eating. Numerous examinations showed nothing. Then the coordination of movement and of the visual fields was impaired and her hearing deteriorated sharply. An MRI showed atrophy of the cerebellum, and her hearing keeps getting much worse.

We were given the diagnosis: paraneoplastic syndrome. The body reacts to the tumour and attacks itself. But why does this happen? The follow-up examinations found no tumour.

Katia was put on a drip of ''Bioven'' – a medicine meant to relieve the symptoms. The first course helped a great deal, the paresis of the optic nerves went away, the coordination improved a little. Later courses brought no substantial improvement. The atrophy of the cerebellum is increasing. Today the child can hardly hear, the coordination of movement is impaired, the nausea and vomiting have lasted more than a year, she cannot eat properly and is losing weight. All this time we have hardly left the hospitals, constantly having examinations and drips.

In Ukraine we have had every possible examination and have been in the hospitals of the highest level – Okhmatdyt and the Institute of Paediatrics. We have now turned to the Sant Joan de Deu clinic in Spain. At the consultation the oncologist questioned our diagnosis and said that an examination by a team of doctors was needed, and tests that do not exist in Ukraine. The examinations are not simple, and if the clinic’s diagnosis is confirmed, Katia faces very complex treatment. The clinic has issued an invoice for 20697 euros.

We need to go for the examination as soon as possible, the child’s condition is getting worse, and the drips last for an ever shorter time. Now she is given huge doses of ''Bioven'' almost every month. The cost of an examination abroad is beyond us; we spend a great deal of time in hospitals and all our money goes on diagnostics. My husband, Oleksii Yarovenko, cannot work for health reasons: in January 2020 he had a massive stroke right there in the children’s hospital. 

We are asking all caring people for help!  Thank you very much for your support!

Ways to help can be found here.