Help save the life of five-month-old Robin!

Mucopolysaccharidosis type 1, or Hurler syndrome, is a very rare and severe disease that damages the entire organ system. Without treatment, Robin will not live more than ten years. This illness requires immediate intervention, including enzyme treatment and a stem cell transplant, to halt its progression. Unfortunately, this essential medicine is not covered by the Health Insurance Fund, forcing the family to find €5,343 urgently for the next six weeks’ treatment. Over six months, the total cost will be €25,920.

The last instance of Hurler Syndrome diagnosed in Estonia was 11 years ago, with a prior case 30 years before that. Robin appeared healthy at birth, but after contracting a severe RS virus at one month old, he was sent to intensive care. Various tests revealed a heart defect and a rare metabolic disease. Robin’s mother recounts their journey:

“When Robin was born, there was no sign of anything wrong with his health. That changed when he contracted the RS virus, leading to intensive care. Tests revealed a heart defect and a rare metabolic disease. When I first heard the diagnosis, I couldn’t take it all in at once. But in the end, you have to accept it and learn to live with it.”

The disease worsens rapidly, showing symptoms like enlargement of the liver, spleen, and joints, along with characteristic facial features by the end of the first year. Later, severe mental retardation can occur. There is hope: enzyme therapy and stem cell transplantation can stop the disease’s progression. Robin’s early diagnosis makes his treatment prospects very good. The first step is enzyme inhibitor medicine Laronidase, costing around €4,500 per month, followed by a crucial stem cell transplant before he turns two.

Please help little Robin receive the treatment he needs to stop this cruel disease from worsening. Donations can be made by selecting “Robini ravi” on the Children’s Foundation website’s donation form or by contributing to the Children’s Foundation of the University of Tartu Hospital’s donation accounts with the keyword “Robin.”