Only one of 20,000 people is afflicted by rare or “orphan diseases” such as Gaucher disease, Cornelia de Lange syndrome, and osteogenesis imperfecta. Because of their low incidence and unfamiliarity, they receive insufficient support and attention from the government.
This Thursday (Dec 15) in “Krusada,” Karen Davila will introduce us to two kids who suffer from these unusual and aggressive disorders in order to seek support from public and private sectors.
Meet 13-year old Raprap who is diagnosed with osteogenesis imperfecta and doesn’t play and go to school. He shouldn’t be nudged because his fractured and sensitive bones fracture easily.
As a mother and a Youth Ambassador who was awarded by UNICEF for her campaign for children’s rights, Karen continues her campaign for children’s health and well-being by bringing these diseases to light.
“It’s difficult to be a parent of a child who suffers from a very serious illness. If we don’t understand them, who will?” she said.
Because it takes more than words to make a stand, listen, take part and be one in Karen’s crusade this Thursday (Dec 15) in “Krusada,” after “Bandila” on ABS-CBN or watch it earlier on DZMM TeleRadyo (SkyCable channel 26), 9:15 PM.
