I am a mother of a child with Osteogenesis Imperfecta, and he has been suffering from it since birth. His brittle bones are not strong and get fractures very easily. Both my husband and I are government servants and send our child to school.
Our son is clever at working on the computer. He did his year five scholarship examination last August and was rewarded after scoring 96 marks. He can sing songs well and loves music. He has even written a small story for the international library day and is set to publish at a book launching organized by the school.
It is very pathetic to see how he suffers when a fracture occurs. He misses school for a long time due to these painful fractures. From birth till now, he has had to suffer from a considerable amount of these fractures. We live in Sri Lanka, and he is given Pamidronte once every three months at a government hospital (earlier at Karapitiya General Hospital and now at Homagama base hospital). Still, there is no improvement.
Starting in January, he will be in year six, with the biggest problem we face is sending him to school as his nurse is most likely retiring next year. Though he is small built, it is very difficult to lift him up. He can manage moving here and there if he can have a powered wheel chair. Unfortunately, we are helpless at this request, as we cannot afford it.
I am much grateful to you if you can help us in this regard and spread the word about this debilitating disease.