Published
10/10/2026, 15:03Where do your 100, 500, or 1,000 KGS go when you donate to charity? For the First Children's Hospice in Kyrgyzstan, these are not just small sums of money, but support helps make daily care for children with serious illnesses possible.
Today, 10 October, marks World Hospice and Palliative Care Day. In Kyrgyzstan, the First Children's Hospice, which remains the only facility of its kind in the country, provides care for children with serious and incurable illnesses and supports their families. Behind the medical care, specialized nutrition, and psychological support lies the daily work of dedicated staff and a range of expenses that extend far beyond medicines and medical equipment.
Palliative care is needed not only for people at the end of life. For children with serious illnesses, it helps relieve pain and other symptoms, prevent complications, and maintain the highest possible level of activity. Its goal is to make a child's life as comfortable and fulfilling as possible, while ensuring that parents are not left alone to cope with everyday challenges.
In pediatric palliative care, around 90% of cases are linked to non-cancer conditions. These include chronic genetic and neurological disorders, for which support may be needed for many years or even throughout a child's lifetime.
Quality of life means being able to relieve pain, control seizures, provide nutrition through a feeding tube or gastrostomy, and ensure access to oxygen therapy or mechanical ventilation. It also includes the prevention of pressure sores and contractures, as well as massage and proper positioning. But it is also about games, music, walks, celebrations, friendships, and new experiences. And it means a rested mother who still has the strength to care for her child.
Behind each of the more than 100 families supported by the hospice is a unique story. In many cases, one parent, usually the mother, leaves work to provide round-the-clock care for the child. The costs of medicines, specialized nutrition, and medical supplies can amount to tens of thousands of soms per month. Consumable supplies alone for a child on mechanical ventilation cost approximately 33,000 KGS every month.
The hospice provides its services free of charge. Its work is funded through donations from individuals and companies: around 65% of contributions come from private donors, while the remaining 35% come from corporate donors.
Ramazan is 10 years old. He dreams of becoming a blogger, creating videos for Instagram, and sharing stories about his life. He already has a phone, but he hopes to buy a lighter iPhone that is more comfortable to hold and is saving up for it.
At the hospice, Ramazan has made friends. It was also here that one of his dreams came true: he got the chance to fly on an airplane. Together with his mother, he traveled to Osh, explored the city, enjoyed plov, and created lasting memories. During the summer, he also took a train trip to Balykchy. All of this was possible despite having a tracheostomy and requiring respiratory support.
When you first meet Ramazan, he seems a little shy. But behind that shyness is an energetic boy who loves singing and dancing. He describes the hospice as his second home.
When Ramazan first arrived at the hospice after intensive care, he spent most of his time lying down, with a ventilator helping him breathe. Gradually, thanks to the care and supervision of specialists, he was able to go without the ventilator during the day. Today, he mainly relies on it at night. The rest of the time, he is able to move around, play, and go about his daily activities.
Ramazan’s story shows that beyond the medical procedures and constant care, there can once again be room for an ordinary childhood.
One of the most resource-intensive forms of support involves children who require mechanical ventilation or other types of respiratory assistance. At present, eight children in Kyrgyzstan depend on such support. The hospice helps families obtain the necessary equipment and consumable supplies, but it is not always able to cover all of their needs.
To discharge a child who depends on mechanical ventilation from intensive care and allow them to return home, a ventilator costing around 500,000 KGS is required, along with a suction machine costing approximately 15,000 KGS. An inverter and a battery backup are also needed in case of power outages, adding another 30,000 KGS to the cost.
According to hospice estimates, the initial package of equipment, care supplies, nutritional products, and consumable materials required when a child is discharged from intensive care can cost around KGS 90,000 KGS. The specific needs depend on the child’s condition and on what equipment and supplies the family already has.
Another significant expense is the placement of gastrostomy tubes. The initial set required for a gastrostomy procedure costs around 51,500 KGS, while the tube itself ranges from 6,900 KGS to 27,000 KGS, depending on its type. Routine replacement is typically required every six months.
In 2026, eight families received ventilators and consumable supplies for children with tracheostomies, with the total value of the support amounting to approximately 13.3 million KGS. Together with parents, the hospice also advocated for government support for these children.
Some children under the hospice’s care require specialized nutrition. The full monthly nutritional needs of one child may amount to around 18,000 KGS. The hospice helps purchase nutritional products worth an average of 8,000 to 10,000 KGS per child. Approximately 20 to 25 children receive this support each month. If assistance is provided to 20 children, the monthly cost ranges from 160,000 to 200,000 KGS. Families cover the remaining expenses themselves or with support from other sources.
In 2025, the hospice spent more than 600,000 KGS on medicines. Donors also purchased and provided medications directly, contributing an additional 150,000 KGS or more. Meals for children and their accompanying parents staying at the hospice cost approximately 34,000 KGS per month. Some food products, including meat, fruit, and other items, are received through donations.
During our visit, two mothers and their children were staying at the hospice. The women had become friends: they cooked together and gathered around the table in the evenings. The day before, they had prepared chicken lagman. These everyday moments matter as well. The hospice strives to create a homelike environment where parents can share their daily challenges with people who understand them without the need for many words.
The work of the hospice depends not only on purchases for individual children. There are also ongoing costs associated with staff salaries and the maintenance of the facility.
Monthly personnel costs amount to 169,300 KGS, excluding taxes. The team includes three nurses providing round-the-clock care, as well as a doctor, a psychologist, and a massage therapist. Another 34,000 KGS is needed each month to provide meals for children and their accompanying parents. As a result, personnel and food expenses alone total at least 203,300 KGS per month, excluding taxes and other operating costs.
There are also unexpected expenses. For example, there was a case when a child in intensive care urgently needed medications costing 80,000 KGS.
There are also unexpected expenses. For example, replacing the pipes in the building last year cost approximately 500,000 KGS, while annual refurbishment and routine cosmetic repairs require around 200,000 KGS.
The hospice also purchases rehabilitation and care equipment, including electric wheelchairs costing around 31,000 KGS, suction machines priced at approximately 15,000 KGS, oxygen concentrators costing about 50,000 KGS, and specialized braces worth roughly 90,000 KGS. The organization also purchased a cough assist machine, which cost 350,000 KGS.
At the same time, it is impossible to anticipate all expenses in advance. Children’s conditions can change, creating a need for additional examinations, medicines, and equipment, while new patients also require support and care.
The hospice building was provided by the Bishkek City Hall for temporary rent-free use for a period of three years, allowing the organization to avoid rental expenses. In addition to financial contributions, individuals and companies donate food, medicines, and medical supplies, assist with repairs, and help organize activities and events for the children.
In 2026, families began receiving some of the consumable supplies required for mechanical ventilation through government funding. This was shared by Aiperi Kapar kyzy, the mother of two children with spinal muscular atrophy (SMA).
Her son, Umar, was diagnosed with type 2 spinal muscular atrophy (SMA). His condition is now stable: he receives treatment with risdiplam and is gradually gaining abilities that were previously difficult for him. He can now raise his arms independently. His younger sister, Aibiyke, has type 1 SMA and requires continuous respiratory support.
When Umar was born, his parents initially believed that he had cerebral palsy and focused on rehabilitation therapy. Later, genetic testing revealed that he had SMA. By that time, the family had already welcomed a daughter, and soon learned that she had the same condition. Two children with the same diagnosis, but with different care needs, meant that the day-to-day responsibility largely fell on their mother's shoulders.
During our visit, Aibiyke was watching cartoons, while Umar proudly showed off his toy cars. Like any other children, they want to go for walks and visit new places, but leaving home is not easy. Taking Aibiyke outside, as she depends on a ventilator, requires the assistance of another person, which means such outings are rare.
Aiperi admits that accepting her children’s diagnoses was difficult. She found support through the hospice’s psychologist and other mothers raising children with incurable illnesses. It was also at the hospice that she learned how to care for her daughter at home while using a ventilator and how to manage the device’s settings.
Previously, the family spent between 60,000 and 70,000 KGS each month on consumable supplies, specialized nutrition, and care products for their daughter. An additional 20,000 KGS was needed for their son's massage therapy and rehabilitation. Today, the children receive massage therapy free of charge at the hospice, while some of the consumable supplies are now provided through government support.
For the family, this means not only lower expenses but also greater peace of mind about the future. In the past, the parents sometimes had to ration consumable supplies out of concern that they would not be able to purchase replacements in time.
The hospice also provides rehabilitation services. Massage therapist and rehabilitation specialist Aman Temirlanov works with children using the Feldenkrais Method, which focuses on mindful movement to help improve the connection between the nervous system and the body. Children typically participate in 15-day courses, while parents receive guidance on exercises they can continue at home. Although this support does not replace treatment for the underlying condition, it helps children maintain the highest possible level of activity.
The hospice also helps children fulfill their wishes, organizing celebrations, outings, and special trips. One girl undergoing treatment for cancer dreamed of seeing Issyk-Kul, and the hospice staff arranged the journey for her. For a child whose life is largely shaped by treatment and medical procedures, such experiences offer a chance to discover something new, feel the wind, and create memories that will stay with the child and their loved ones.
Another boy celebrated his fifth birthday at the hospice. There were animators, magic shows, games, and a cake decorated with characters from his favorite cartoons. Not long afterward, he passed away, but the photographs from that day still warm the hearts of his parents and the hospice staff. In those pictures, he is not a patient, but a birthday boy surrounded by people who came together to make his day special.
Sometimes, making a dream come true begins with a gift that opens new opportunities. For example, Bekzat received a mobile phone, while Alikhan was given a laptop that he used for his studies. For these children, they were not just material possessions, but opportunities to learn, explore new interests, and pursue the activities they enjoyed. Through the support they received and the attention given to their wishes, their dreams gradually became a reality.
One day, singer Nurlan Nasip came to the hospice to celebrate a boy’s 17th birthday. Instead of a noisy restaurant, the celebration took place in the hospice kitchen, surrounded by friends and people who had become like family to him. The teenagers laughed, talked, and made plans for the future, while the singer performed his songs, creating a small private concert that was beyond any monetary value. The boy later passed away, but the memory of that meeting remains with those who were there.
Another child under the hospice’s care also dreamed of meeting Nurlan Nasip. When the singer learned about her wish, he came to visit her with flowers and a teddy bear. A few days later, the girl passed away.
This is why people in Kyrgyzstan choose to donate: so that children and their families receive not only medical care and the support they need, but also moments of happiness that cannot be measured in soms.
A celebration, a trip, a meeting with a favorite artist, a new toy, or an evening spent with friends cannot replace medical treatment. But they give children back something that illness often takes away from them: an ordinary childhood. They also help parents remember not only the worry, hospital visits, and medical procedures, but also the smiles, laughter, and happy days.
World Hospice and Palliative Care Day serves as a reminder that even when a disease cannot be cured, care does not end. It continues through the relief of symptoms, support for parents, and the creation of conditions that allow a child to live as fully as possible, given their condition.
