6-year-old Vasco from Peru loves to play, paint, dance and read. But most of all, he loves spending time with his family.
It took three years for Vasco to obtain a diagnosis for his rare condition. After being misdiagnosed and attending many different hospitals and health clinics in Peru without any doctor being able to determine what his illness was, the doctors finally referred him to a hospital in Lima, Peru’s capital. It was there that he was diagnosed with Gaucher’s disease, a disease that is frequently confused with other illnesses.
Vasco’s symptoms of Gaucher’s disease included persistent anaemia and increasingly frequent and persistent bleeding and growth impediment. Treatment for this condition is available in the form of a blood infusion every 2 weeks, for the rest of his life.
Sadly, Vasco has been unable to receive this treatment which would greatly improve the quality of his life. His mother is fighting for the government to allow him access to this treatment, which would help to stop the progression of the disease.
Vasco’s mother has been unable to work whilst she cares for her son. She says, “It would be ideal if the government could provide us with support to enable us to care for my son without having to worry about being fired from my job because of the amount of leave I have to take to take care of my son”.
Vasco also finds difficulty with socialising with other children, facing anxiety over his symptom of bleeding, along with the limitations on his activities due to his condition.
His mother has not given up hope: she takes inspiration from stories of other people living fulfilled lives with Gaucher’s disease; “It brings me comfort and joy when I hear of patients with the same disease who can have a good quality of life, with symptomatology that goes unnoticed”, and she knows this will be the case for her son when he is allowed access to treatment.
Vasco is, in the words of his mother, ”loving, intelligent” and a “brave child, with a desire to live” through all he has experienced at such a young age.