Padrinos para niños con OI

The Situation

Treatment of a child with OI (osteogenesis imperfecta) incurs high expenses due to:

medical appointments (pediatrician, orthopedist, pediatric endocrinologist, dentist, ENT specialist)

medicines (biphosphonates, analgesics, vitamin and mineral supplements)

mechanical and correctional equipment (devices for legs, special chairs and seats, walkers)

surgery

post-surgery rehabilitation weekly physical therapy advice

In developed countries with enough medical and social resources, the national health care system usually covers some, if not all, of the expenses.

However, many children with OI have been born in countries where national health care is limited or outright nonexistent. Their quality of life and physical and intellectual development possibilities depend on medical treatment. Unfortunately, the financial support of this treatment is the exclusive responsibility of their relatives.

Raquel Camacho

Some families in countries lacking a national health care infrastructure can in fact afford treatment of their children. They can pay for medicines, surgery and physical therapy. Sometimes they can even allow themselves the luxury, by making a lot of sacrifices, of regularly taking their child abroad in search of a physician who can treat and help him.

Unfortunately, those cases of families that are better off are the exception. In countries without state-run health care, the majority of children with OI lack treatment, such as:

physical therapy
medication
an adequate diet,
wheelchairs or other mechanical equipment
analgesics to relieve pain

These children are condemned to progressive deformity and permanent pain. Too often governments take no interest in the physical situation or schooling of these children. In those cases they end up being treated as pariahs, making a bad situation even worse.

E-mail: padrinos@osteogenesis.info