Little Radha is 7. She suffers from ostoegenesis or brittle bone disease has terribly deformed legs and is unable to stand. The slightest fall or hit causes a fracture as her bones have become terribly porous. She has already had more than a dozen in her tiny life.
She came to our office in the arms of her mother clad in a fleece outfit. The ambient temperature of the moment must have been 40 degrees Celsius. When we asked her mother why she was wearing such an outfit, the answer was simple and direct. She had no other decent clothes.
Radha lives in a sunken hovel, the roof of which is lower than a person standing and where not a shred of light enters. Her father lost his job as the factory in which he worked closed. He now sells tea but can barely make both ends meet as they have 4 children. Radha seemed a healthy child till the age of two when she first fell and broke her leg. It was then that she was diagnosed with osteogenesis.
1 in 60 000 children get osteogenesis and little Radha is one of them. Also known as brittle bone disease the ailment has no known cure. Management of the disease includes focusing on preventing or minimizing deformities and maximizing the child's functional ability at home and in the community. Sound doable but in a home like hers it is close to impossible. Support groups exist but not for someone like our little Radha. The prognosis is scary as it not only affects bones but can result in brittle teeth, loss of hearing and easy bruising. The main cause is little or poor type of collagen.
Wheelchairs or braces are recommended and exercise like swimming is extremely beneficial. But where does a child like Radha go to swim or how does she use a wheelchair in the hole in which she lives. A child with OI needs good nutrition, rich in calcium, leafy vegetables, cereals, milk products all not within reach of a family that barely survives. The doctors had suggested this but for a family that can barely feed 6 mouth this was quasi impossible. And little by little her legs contorted as she suffered one fracture after the other.
New research suggests the use of bisphosphonates that seem to have has excellent results but that still seems at a trial stage. We will of course look into it!
Radha was denied any form of childhood and could not accompany her siblings to school or play. She just lived in her dark hole and dragged herself from one corner to the other. Two of her siblings come to our creche and that is how we came to know about her. Thank heavens her spine of head did not suffer any fracture!
Radha is an intelligent child who could learn like any other seven year old but her ailment closed all doors to her. We hope to be able to help her as best we can. As you know we at project why believe in miracles!