Future for Alice

Alisa Shevchuk is from Kiev and she is only 4 months. Half of her life this girl is living with the diagnosis of primary hemophagocytic lymphohistiocytosis (HLH). This is a rare genetic disease that able to kill the child in a few days. The only treatment for such a disease can be chemotherapy. And in case of remission the bone marrow transplantation will be required. Alisa needs the transplantation from nonrelative donor, but in Ukraine such an operation is not carried out. We are going to treat Alisa in Bambino Gesu Rome clinic where the operation costs 158 thousand euro.

It’s so hard to write about such a little baby. Cute lovely girl is looking at me from her little bed. She has curious eyes and chubby cheeks. Alisa has just eaten her meal and is ready to take a sleep. She is at home with her parents and everything is fine. But only yesterday Alisa was lying under the dropper, it was very hurt for her and she was spiritless and sad. And she will always be in this condition after having the injection of strong drugs in huge amount. It started 2 months ago just on the New Year eve. Alisa’s temperature rose up very suddenly and reminded for a few days. And nothing special but only the control blood test showed the incompatible with life result. On that day Alisa was taken to child reanimation with the oxygen mask on her face. Obscurity has come.

Her illness was diagnosed not at once. But when the diagnosis was confirmed the chance to survive was equal to 1%. Doctors were saying: “we are lucky to have a confirmed diagnosis when she is still alive. – girl’s parents tell. HLH is a very rare disease. The frequency of congenital form is one to 50000 of newborns. HLH - it’s heritage disease that shows up with the possibility of 25% when both parents are carrier of broken gene. The disease progresses very fast and that’s why the timely correct diagnosis and treatment are dramatically needed for patients with HLH. In this case the chemotherapy is the only way to treat the disease (to stable patient’s condition) and allogeneic (nonrelative) bone marrow cell transplantation. Without this transplantation the death will come with probability of 90% on different estimations. And the remission lasts not more than several months.

Alisa does not realized what’s happening to her completely. First 2 months she was crying when there was some discomfort. She was given meal, the dippers were changed, she was taken on hands and everything was getting well. But next 2 months nothing has changed when she cries. She has a fever, she has a stomach ache, she has nausea and her cell attacks her own organs. She doesn’t understand anything, and the cause of pain and discomfort cannot be explained to her.

Alisa does not know what 158 thousand euro is and that this amount is needed for her treatment. As well as she doesn’t know how difficult it was for her farther to gather the first 40 thousand ones. She doesn’t know how much partial and kind people her parents met while she’s ill and doesn’t know that apparently dad will not get the all necessary amount by himself. Nothing she knows.

But she is feeling. She is feeling the attitude to her from the medicine staff. There is “non danger” person to whom she allows the most painful procedures. It’s her favorite male-nurse. And also there are “danger” people and she starts to cry every time when sees them. That’s Alisa’s decision. She feels how it’s comfortable, calm and safely with the parents even if she has a pain. She can flirt and smile and she can cry and demand. She doesn’t need something more. Mother is hugging her daughter very tightly, kissing her constantly and viewing. Father is searching for the most recent printed out Alisa’s photos and is sorting and sorting them, then showing to me and starting to search again. Alfred is a cat- sphinx is jumping on the sofa that is just next to the baby’s bed. The sweets, coffee and tea are on the table. Interrupting each other parents are telling about the day when Alisa came into our world, and how eagerly they had been waiting for her and how lucky they had been that day.

This cozy atmosphere is confusing and it doesn’t give to realize the reality. Lovely little girl is imperturbably holding her mom’s hear while we are talking and she terminally ill. And the young beautiful cheerful and active parents are in dead desperately trying to save their second child as the first one died at the age of 1 month. Sometimes they are joking and laughing and it seems like they do not realizing the reality – that everything is awful and catastrophic. But they do. And they do all their best to protect and save the daughter. Let’s help them.

Name: Alice A. Shevchuk, born 05.11.2015

Location: Kyiv

Diagnosis: primary hemophagocytic lymphohistiocytosis