Lola Tillyaeva’s Foundation Helps Children with Congenital Heart Diseases

 We are all moved when we see our fellow human beings suffering, but our hearts really go out to children in need. When sick children go without help because their families are too poor, it is indeed tragic. For Lola Karimova-Tillyaeva and her businessman husband, Timur Tillyaev, this was the situation they saw playing out in their homeland, and they were inspired to act. 

In 2002 Lola Karimova-Tillyaeva launched the You Are Not Alone foundation. Its charter is to provide homes, schooling opportunities and medical care for children in need. Working hand-in-hand with the National Centre for the Social Adaption of Children (NCSAC) established by Lola Karimova-Tillyaeva a couple of years later, they have been able to make a difference to the lives of thousands of children.

One of the main challenges is the desperate lack of treatment available to young children with life-threatening cardiac problems. In 2015 the French NGO, La Chaîne de l’Espoir (Chain of Hope) began working with Lola Karimova-Tillyaeva and her team, and the partnership has proved very successful. For complicated cases of congenital heart diseases, medical staff and directors from You Are Not Alone meet to discuss what treatment options are most appropriate, including surgery. 

Thanks to the assistance of Lola Tillyaeva’s organisation, these children then receive the best medical treatment available. The best specialists in Uzbekistan work alongside foreign experts either at home or abroad, and in cases that require more specialised equipment, the children are flown to France with their families for the operation.

Over 130 children with cardiac conditions have been treated in this program.

Since 2015 when Olivier Baron – a French cardiac surgeon – was first invited to Uzbekistan to examine and consult on children with congenital heart diseases and to perform surgical operations, he and his team have worked alongside an Uzbek medical team to help dozens of children. The French team also give presentations and master classes for their Uzbek counterparts, sharing their experience in paediatric surgery and intensive care as well as in new methods of diagnosis and treatment. Uzbekistan spans a vast territory but Lola Karimova-Tillyaeva is proactive in ensuring even children from isolated parts of the country have access to medical care.

As part of this drive, Lola Tillyaeva and Timur Tillyaev decided to assist pre-existing hospitals and clinics directly. For instance, to improve the standard of care at the State Perinatal Centre in Tashkent, the You Are Not Alone foundation provided a whole suite of new specialized equipment from life-support systems, cardiac monitors and ultrasound machines to phototherapy lamps and imaging systems. Since the equipment was installed almost a decade ago, countless mothers and their new-borns have benefitted from these state-of-the-art facilities.

Seeing the success of this program, the foundation backed by Lola Karimova-Tillyaeva and Timur Tillyaev went on to renovate and refurbish four operating theatres at the National Specialized Surgery Centre in Tashkent. Thanks to the medical equipment they provided, it is now possible to perform the most complex cardiac surgeries in Uzbekistan’s capital city. In 2015 the You are Not Alone Foundation provided vital equipment to another clinic, the children’s unit of the State Institute of Haematology and Blood Transfusion. 

An acute shortage of proper equipment had resulted in delays and complications, but thanks to the provision of KellyMed infusion and syringe pumps crucial to the daily treatment of children with various haematological disorders, many more children have been effectively treated.

Lola Tillyaeva’s You Are Not Alone foundation also works closely with the National Centre for the Social Adaptation of Children to support children with disabilities. Aware how the provision of a sturdy wheelchair or a tailor-made prosthesis can be life changing for the families of disabled children, You Are Not Alone has stepped forward here, too.