Here I tell you about my life with OI
from the first fracture when I was 11 months old until today
What is wrong with me?
When I was 11 months old I broke my first bone. After this there were many more to follow and no doctor knew what was wrong with me. It took many months and big effort of my parents until the first doctor in Nepal suspected Osteogenesis Imperfecta (OI).
I had my first femur fracture when I was playing with my brother and fell down on the 1st of April 2010.
I was treated with a simple cast in the Manipal hospital.
As the doctors in Pokhara didn't know what to do I had to go to the B and B hospital in Kathmandu. There the doctors suspected OI for the first time.
I had my first femur fracture when I was playing with my brother and fell down on the 1st of April 2010.
Treatment in Nepal
Before I got a proper treatment I had a total of 9 femur fractions and different other fractures. The doctors didnt't know much about OI so no one could really help me. My father spent so many hours searching the internet for hospitals all over the world to treat my disease. But the salaries in Nepal are really low compared to other countries so my parents could not afford a treatment abroad.
On the 17th of January 2012 the doctors Fassier and Rauch diagnosed OI at the Montreal Shriners Hospital in Canada.
The x-ray at Shriners hospital showed many fractures and Dexa showed a bone density of -5.
Me slowly learning how to move.
On the 17th of January 2012 the doctors Fassier and Rauch diagnosed OI at the Montreal Shriners Hospital in Canada.
Treatment in Canada
It was my biggest luck that my Dad found a hospital that offered to treat me for free: The Montreal Shriners Hospital in Montreal, Canada. But we still had the big challenge of raising enough money for the flights for me and my Mum. The OI Parents group in facebook helped my parents to find out many loving and caring OI Parents, who helped me to bring me in Canada
in January 2012. Many Canadian and other kind people around the world helped for my treatment process. The journey to Canada was a nighmare for my Mum because it was all so different and difficult to go to Canada from Nepal, she didn't know anything about how the western world works and I was still having a femur fracture. But she was very brave and we arrived safely. At the airport wonderful Canadian OI parents were waiting for us to welcome. My Mum was extremely happy to see them.
Together with the physiotherapist I tried to walk in March 2012.
Before leaving Canada after 5 months I received my second PAM infusion therapy, The PAM usually takes 3 days.
Together with the physiotherapist I tried to walk in March 2012.
My first steps
3 months after the surgery I managed to stand up independently for the first time! But before this I had to do different trainings that were sometimes hard. But I had great support of the Canadian physiotherapists.
Back in Nepal
Thanks to the knowledge of my parents and the instructions of the Canadian doctors, the doctors in Pokhara can now do my PAM infusion therapies. So every four months my Mum Durga takes me to the hospital where I receive the infusion. This procedure takes 3 days and my Mum has to take days off at work.
I can also go to hydrotherapy once a week although I should go twice a week but this is too expensive. Anyway, I enjoy hydrotherapy very much as it strenghtens my bones.
I am in a special school where the teachers care for me a lot! This is important because there are so many kids in a normal school that the risk of getting injured is too big.
After many difficulties it became finally possible that I could receive my further PAMs in Pokhara.
Hydrotherapy is so good for me and my bones!
This is the first day of the recent PAM which always needs 3 full days at the hospital in Pokhara.
After many difficulties it became finally possible that I could receive my further PAMs in Pokhara.
My future
I should have gone to the hospital in Canada in 2014 for an important check-up. But this was not possible because my parents could not afford the flight. But they talked to the doctors and agreed that I could also come in 2017. I hope that by then, my parents will have enough money for the journey!
I will need PAM infusions regurarly for many years.