Kamila Zhanyshova

A rare condition affects only 2 to 4 cases per million people. Five-year-old Kamila has unfortunately become part of this grim statistic. Her mother pleads, “Please give my daughter a chance at life and a childhood free from pain!”

“My heart breaks every time I tell the story of my little girl, Kamila. Tears fill my eyes, but right now, her life depends entirely on your help. Please assist us in giving our daughter a chance at a childhood without pain and constant hospital visits. Any support is invaluable to us! Thank you to everyone who won't remain indifferent. We appreciate your help and your prayers!” – Kanykey, Kamila’s mother.

For a long time, little Kamila was unable to receive an accurate diagnosis. After numerous tests and challenging trials, it became evident that she has a rare condition known as Langerhans cell histiocytosis. This condition occurs when specific immune cells multiply uncontrollably, damaging various organs and tissues, including the bone marrow, lungs, liver, spleen, skin, and lymph nodes. These cells, which are meant to protect the body, become pathological and begin to "eat away" at healthy cells.

Kamila was born a healthy and strong little girl. Her parents lovingly referred to her as "4,500 grams of pure happiness." They will always cherish the memories of her first cry, her first smile, and her first attempts to hold up her head. Their home was filled with joy and the blessing of the Almighty. Everything seemed perfect for a baby’s childhood.

However, when Kamila turned two months old, the family paediatrician recommended an X-ray of her head. After an examination in Manas (formerly known as Jalal-Abad), the doctors first used the term "encephalopathy," indicating bleeding in the brain. This diagnosis was later confirmed in Bishkek, where medication and massage therapy were prescribed. Her parents treated her at home, believing that everything would improve.

Misfortunes began to pile up for the little girl, Kamila. She experienced persistent ear infections, painful mouth ulcers, and severe nappy rash. Her skin was afflicted with atopic dermatitis, and she suffered from diarrhoea 8 to 10 times a day. Abscesses developed all over her body, and a disturbing lump appeared in her armpit that resembled a dangling tongue. Pus spread extensively, affecting her groin, anus, upper eyelid, ears, and mouth. Her nails began to rot, and one by one, she lost all the nails on her hands and feet. Her teeth started to fall out, and her mouth was filled with pus. It was heartbreaking to witness her suffering! For an entire year, Kamila was treated for conditions she didn't actually have, while her parents continued to hold on to the hope that things would improve. Unfortunately, the situation only worsened.

“I remember holding Kamila in my arms while she screamed in pain, but I couldn’t help her. I cried at night, begging Allah to give us strength. The doctors threw up their hands, saying, ‘This isn’t our area of expertise...’” — Kamila’s mum.

It was only in the pediatric oncology department, during a consultation with a haematologist, that the illness was immediately recognised. All of this suffering was caused by Langerhans cell histiocytosis. The doctor said, “Transfer her to us.” Kamila underwent seven months of chemotherapy and endured gruelling treatment. The “Sun of Hope” Foundation supported the little girl during this difficult time by covering the costs of expensive tests. The most cherished outcome was achieved – remission. Kamila’s family hugged each other and wept with happiness, believing that the worst was behind them.

Sadly, the illness returned. Kamila’s relapse broke everyone’s hearts in the family. The little girl now needs expensive medication; without it, remission is impossible. The family cannot afford such treatment on their own. They have been through a long and difficult journey, and their resources are exhausted. All their savings have been spent, loans have been taken out for treatment, and further expenses lie ahead.

Kamila has been through a lot, but she remains a strong, kind, and cheerful little girl. Rarely complaining, she endures her pain with the belief that she will recover. She loves to draw, play, laugh, and spend time with her brother, Umar, and sister, Malika. Kamila is a bright child with a big heart and a strong spirit. Despite everything, she continues to smile. She dreams of becoming a doctor so she can help other children. All she wants is to live, play, laugh, and grow up.

"When Kamila falls asleep, I whisper, 'O Allah, protect my daughter, grant her health, and send us help.' I believe that these prayers will be heard through you, kind people. Kamila looks into my eyes with hope and asks, 'Mum, I’ll get better, won’t I? I want to run and play like everyone else!' My heart breaks when she says that because I know that without your help, we won't manage. This is the price of my little girl’s life, and we cannot afford it ourselves. May Allah reward you for your kindness! May your help return to you!" – Kanykey, Kamila’s mum.