At the age of two, Ellada developed a progressive genetic disease that deforms bones, joints and muscles, causing neurological ill health, physical and intellectual retardation.
This disease is called "multiple sulfatase deficiency with ichthyosis".
There are no medications that alleviate the disease. Medicine can only support quality care, physiotherapy procedures and special nutrition, which the family has to buy themselves.
Ikhlosbek has had many developmental defects since birth, some of which were compensated for by surgery, medical procedures and medications.
But feeding through a gastrostomy tube is still the only way to feed him. The boy is growing, and the costs of enteral nutrition are increasing.
We can help them and buy special nutrition for them for the next four months.
