Unique childrens publication – a fairy tale story Ali and the World Inside, revealing the life features of children with the rare hereditary disease hemophilia, was presented at the S. Begalin Republican Childrens Library. The book was published by the biopharmaceutical company Takeda in Kazakhstan in partnership with the Kazakhstan Association of Hemophilia Patients. The fairy tale story is released in both Kazakh and Russian languages and is recommended for children of primary and middle school age, as well as their parents.

The fairy tale story "Ali and the World Inside" is about a boy with hemophilia, created to raise public awareness about this condition. Through simple life situations, the book, presented in a popular artistic form, highlights the unique aspects of life for children with this illness. This captivating story will help readers gain insight into the physical and social adaptation of children with hemophilia, while showing that despite some limitations associated with the disease, it is possible to live a fulfilling and joyful life, appreciating everything around.

The story about an ordinary boy named Ali is written in the adventure genre. One day, Ali embarks on an extraordinary and exciting journey. Together with his friends Lisa and Phil, Ali explores a mysterious and unknown land full of secrets and surprises. The tale of young Ali and his friends was created by Kazakh author Olga Ogai.

"My task was to write a childrens book with an engaging plot about hemophilia and the lives of children living with this diagnosis, without using complex medical language. My inspiration came from beloved childhood books by Astrid Lindgren, Viktor Dragunsky, Irina Tokmakova, and, of course, J.K. Rowling. Almost immediately, I conceived the main character—Ali. While preparing for the project, I did extensive reading, gathered information, and spoke with mothers of children with hemophilia. Ali became a composite image of hundreds of boys living with this condition. The book incorporates many facts and details that shed light on the behavior of parents, grandparents, and the social environment of such children. The idea to place Ali inside his own body to vividly illustrate what happens to him arose almost instantly as well. Todays children are largely visual learners, shaped by a culture of grand films and colorful cartoons. I wanted Alis story to captivate them, spark their imagination, and encourage creativity. Most importantly, I wanted every child to understand that every person, regardless of their unique traits, is an enormous, unique world worthy of love and respect," explained the author, Olga Ogai.

The format of the adventure story about the inner world of a child is enhanced by vibrant illustrations created in a hand-drawn technique, blending modern technologies with traditional childrens book art. The illustrations were crafted by Kazakh artist Dinara Arystanbekova. The style of the illustrations conveys a bright and uplifting mood, seamlessly complementing the text and helping readers immerse themselves in the story.

It is important to note that the storyline of the book is based on real-life stories and insights from the relatives of children with hemophilia. According to Lyudmila Shagabutdinova, the mother of a patient with hemophilia, this story greatly helps to understand that much depends on the attitude of the family and those around them.

"The story of the boy Ali is the story of my son and other children with hemophilia. It is a tale from my life and the lives of many mothers and grandmothers," said Lyudmila Shagabutdinova. "It is important to note that instead of evoking pity and fear, such stories provide knowledge and set the right mindset for children. Hemophilia is a condition of the body that does not make a child with the diagnosis any worse or better. As the books hero Ali says, we cannot remove hemophilia from the sealed cell of DNA. But we can accept it, learn to live with it, and be happy."

The book has received support from the Kazakh medical community, including a review by the countrys leading pediatric oncologist and hematologist, Lyazat Manzhuova. According to her, there are many different diseases in the world, and some are rare, affecting only a small number of people, which is why they are called rare or orphan diseases. Hemophilia is one such disease. Today, much is known about this condition, and treatments have been developed that improve the quality of life for people with hemophilia, allowing them to live full lives in society. Research is continuously underway to develop new methods that may, in the future, lead to a complete cure. However, another question arises: how prepared is society to accept and understand the challenges faced by such individuals? What questions do children with this disease have? What do they feel? What fears accompany their lives and the lives of their families? And what happens inside the body of a person with hemophilia?

"While not all, but some of these important questions are answered in the book Ali and the World Inside. This captivating fantasy story will help not only to understand the mechanisms of the disease but also to explain how to live with it and why it is so important to maintain the correct treatment regimen throughout life. This childrens, yet not only childrens, book, I believe, will be useful not only for our young patients but also for everyone around them: parents, relatives, friends, neighbors, classmates," noted Lyazat Manzhuova.

It should be noted that the idea of creating the book belongs to the biopharmaceutical company Takeda in Kazakhstan, which, as part of its corporate social responsibility, implemented this project in response to a request from the Kazakhstan Association of Hemophilia Patients. According to Mikhail Vladimirov, the CEO of Takeda in Kazakhstan, the main goal of Takedas work is to improve peoples health and create a better future for the world.

"As part of its research activities, Takeda continues to search for new approaches to the treatment of rare diseases. Thanks to advancements in medical science, positive progress has been made in the life expectancy of these patients. Today, thanks to innovative therapies, patients with hemophilia can live full lives and achieve great success in any field of activity, just like ordinary people. However, society remains insufficiently informed about rare diseases, so the social adaptation of hemophilia patients should be given serious attention," emphasized Mikhail Vladimirov.

In his opinion, children always need the support of society, especially when they have a serious illness. A trusting dialogue within society that conveys all the information about the issue helps to form the right response to the disease and gives patients hope for a full life. This issue is especially relevant for children with hemophilia, as support from parents and peers plays a crucial role in their proper development. "Our company strives to provide comprehensive support to patients suffering from rare diseases and raise public awareness about the problems of hemophilia," summarized the CEO of Takeda in Kazakhstan.

The story of the books hero, Ali, who leads an active lifestyle despite his hemophilia diagnosis, proves that awareness allows children and their parents to live a full childhood, while their peers become more tolerant and attentive to those around them. From this perspective, the fairy tale "Ali and the World Inside" will help foster an inclusive culture, as noted by Takeda. The book will help children with hemophilia see themselves in literature and feel their significance in society, as well as promote the development of tolerance.

It is worth noting that the book is not intended for commercial sale. It has been published in a special edition and distributed to the Kazakhstan organization of patients with hemophilia for distribution among its members, as well as in all district childrens libraries in the city of Almaty in two languages.

It is noted that as of today, approximately 400,000 people worldwide suffer from hemophilia, of which 50–60% have a severe form of the disease. In Kazakhstan, as of 2023, there are 1,633 patients with hemophilia, including 1,100 adults and 533 children (data from the JSC "Scientific Center of Pediatrics and Childrens Surgery," the Public Association "Kazakhstan Society of Hematologists," 2023).

The article is sourced from the website https://pharmnewskz.com/.