Stories

Through the generosity of our supporters, we are able to provide funding to our country partners who help children like Lazar.

Lazar is 6 years old and suffers from a rare disease, Dravet syndrome, which was diagnosed at 6 months old after he suffered a series of epileptic fits. There is no known cure for this illness and the life expectancy for children with this disease is very low – 20% of children with Dravet syndrome do not survive beyond the age of 10.

Lazar has severe fits which occur both day and night in clusters of 15 to 50 at once. After experiencing these fits Lazar is exhausted, has a weak appetite, can hardly move, and requires re-hydration and a lot of care. As Lazar does not know when he will have these fits, he cannot protect himself and often falls and injures himself. His family are in a difficult position, having to ensure someone is watching him at all times to stop him from getting hurt.

Due to his condition, Lazar is behind in developing his speech and communication. He struggles to attend school because of his illness, and misses out on opportunities for education and to socialise with other children. His mother has to stay at home full-time to care for him. They have received very little support from the state healthcare system.

Our partner hospice’s team have been providing support to Lazar’s family since 2022. They offer medical monitoring, advisory consultations, physiotherapy and psychotherapy. In addition, the team have managed to obtain an expensive specialist drug to help treat Lazar, which they include in his care as part of the free services they offer.

The counselling and psychotherapy is not only provided to Lazar, but his parents too. It helps them to feel supported and to learn how to cope with their difficult situation. His parents are also taught by the Hospice team how they can best care for Lazar, and they know they have somewhere to turn to when they are unsure or concerned. They are grateful to have found the hospice team who will support them through their remaining time with Lazar.

Help other patients like Lazar by donating here: