The story of Animesh
300 Million people with rare diseases
600+ events worldwide
106+ countries involved
When my son Animesh was diagnosed with Osteogenesis Imperfecta (OI), doctors told me that he will not be able to walk. There was no proper treatment for this condition at that time in our country; and still isn’t. I was really surprised and happy when I met a facebook group having the same problem. It is called OI Parents group, where I post about my son and his problems, including every X-ray photo and reports from the hospital. The OI parents group is very supportive.
I realized that people living with OI could live a better life if granted an access to healthcare. My wife Durga Kc and I promised ourselves to change his lives. We have received help and support from many kind people to bring Animesh to Canada for help with his OI. There is no cure for OI but there are lots of equipment and technology to make life easier. Now he goes to school in spite of having 57+ fractures in his 15 years. Just a couple of weeks ago he got fractured his hand and treated with Nail Surgery, now he is going to school and continue his studies. From 2011 I am advocating OI, a rare disease in my country. I am trying to establish an OI support community group, but because of many barriers I am unable to achieve this. But I am still trying. Rare Disease Day #rarediseaseday2024
Awareness makes a difference …… !