Fighting with a rare disease called Osteogenesis Imperfecta (OI)

The story of Khim Bahadur

I, Khim Bahadur from a developing country Nepal. My son Animesh has a rare disease called Osteogenesis Imperfecta (OI). When he was 11 months of age, his first femur fractured happened while playing in he low bed. Next day we took him to the hospital, docor said it’s a green line fracture and children fracture recovered soon. But after paster off of first fracture second fracture in 15 days. Again we took him to the same hospital. Doctor said we are not giving good care of him so broken femur again. But with in a month of plaster off of second fracture there was another big fracture in the same place. Then I post an X-ray on social media and asking “why my son has recurrent fractures ?” many people suggested many ideas, and some blamed us that we are not good parents, some said may be a rare disease, OI. But in Nepal clinically we can’t diagnosis OI, and there is not other features seen of OI condition. I put his X-ray and other clinical features in social media. Many people suggested it could be an OI. In my county OI (Osteogenesis Imperfecta) is a very new thing, no body new about it. Even the doctor and nurses don’t know about it. I keep on searaching about OI in internet and fount OI facebook group and yahoo group. I joined the group and found many parents with same condition (OI). They gave me lots of suggestion to care of my child. Also suggested me to bring my son to Spain, Germany, USA or Canada for further treatment. But it’s like a dream to go to abroad for the treatment of my son. But we don’t have passport to go to abraod. It took a month to make our passport. Because at that time it was not easy to make a possport. My son son was in hip spica plaster and we were in another city for making passport. It was so hard time for us to make passports. I decided to make my wife’s and my son’s passport. And It took almost one month to make them passport. At the same time it a big dream to get visa for developed country for Nepalese people. But many kind hearted people, who are also OI Parents are supporting us for taking my son to abroad. Till that Animesh got about 15 fractures. I have sent an application for free treatment to more than 200 hospitals around wortld. US 1 dollar become 110 rupees in our currency. So, it’t too costly for the paid treatmnet. Even we can’t pay the hospital bill if we sell our whole property. First we tried Spain, but we are not succed, Then again we tried to Canada. This time Shriners Hospital, Montreal, Canada accepted my request. It took about a year to bring my son to the Shriners Hospital, Canada. His treatment was is process in Canada, and I was started to raising awareness of OI in Nepal from 2012.

In 2012, I have organized a blood donation program on 6th of May, organized a talk show program at the same time about rare disease and OI. 

Every year on 6th of May, we are celebrating Wishbone Day for raising awarenes of OI.

In 2013, I have organized talk show program in Radio and raised awareness of Rare Disease and OI.

In, 2014, I have organized talk show with the doctors in hospital in Pokhara City about Rare disease and OI.

In, 2014, writing varoud article about OI and rare disease and it’s challage in Nepal.

2015, I have gone to the FM radio and talking about rare disease and it’s situation in Nepal, and also write an articel in a National newspaper about OI and it’s issues. 

2016, I have written  Articles about rare disease in National newspaper and News magazines

In 2017, Organized poster sharing program at social media for raising awareness of OI and rare disease in Nepal.

2018, Organized a talk show program at school where my son is studying. My wife and my son also participated in the school talk show program for raising awareness of OI in Nepal. 

2019, Organized an awareness program from the sky, through paraglading. And photoshoot program also organized for raising awareness of OI, article published in a National newspaper and awareness campaign of rare disease in Nepal

In 2020 due to the Covid19, we have only raised awareness through soical media, but we went to a top hill and organized a photoshoot program to spreading awareness of rare disease and OI in Nepal

As photographer I have raising awareness of OI in Nepal. I am so happy to inform you all that One of my photo also selected in top 5 in EURORDIS Photo Award 2021. 

In Nepal and also from some part of India, if OI case is found people called me for further actions. In my place if OI case is found Doctor called me for further care of the OI patient. 

Now my son is 9 years old, and he is going to talk show in fm radio. And I am alsways working for raising awareness of rare disease in Nepal.