My name is Emily Zawe and I have type 2 Osteogenisis Imperfecta (brittle bones disease). To date, I have had 47 fractures and 10 surgeries. Growing up with Osteogenisis Imperfecta has been a difficult task to achieve but I’ve made it this far as strong as ever and this is my story….. so far.
I was diagnosed with Osteogenisis Imperfecta when I was 18 months old. My family and I were forced to relocate to South Africa for better treatment which I receive from Steve Biko Hospital.
At age 3 I started attending school at Balo and Friends Crèche. As a pre-scholar barely out of the toddler ages it was pretty rough. I was not allowed to run jump or climb jungle gyms because of the fear of falling and breaking. I rarely had friends at that age because every other child was outside playing, I then found myself building friendships with my teachers instead. It was hard watching kids do all the things I was not allowed to or could not do. However there were times in which I went against doctor’s orders which resulted in a lot of breaking, I mean what’s a kid to do? I was in the hospital almost every 2 to 3 months. The hardest part was every time I learnt how to walk, I would fall and have to start from crawling on my bottom, learn to stand again and start taking baby steps again.
At the age of 6, I started school at a mainstream Primary School. I had more friends then and was academically performing well. I had small accidents here and there and spent a lot of time I hospital. When I reached grade 4, there were a few classes upstairs. My parents had to carry me up to the grade 4 class, a flight of 20 steps at the start of the year. They did struggle a lot and were always in meetings at the school. I had a hard time moving around, so the school tried to support with school ramps around the school to make it a bit easier to get around. One challenge was the toilet, as my wheelchair could not fit inside.
In grade 5 I had to undergo 2 major surgeries and missed a lot time from school, I was then forced to start schooling in Special School in Pretoria. I attended the school for 3 months and was told that I was too advanced there and they requested I go back to a mainstream school, however when I went back to my previous Primary school, I was forced to repeat grade 5. That was a disappointing set back for me. To make it worse my parents had to then carry me up 40 steps every day. At that point, the school then stopped the change of classes in order accommodate me as the only wheelchair-bound student.
My mother then appealed to the Department for me to be transferred to a different primary Primary school which was closer to home and as I would get tired a lot. In grade 6 I transferred and continued my studies. I had a hard time fitting in the school. There were steps in the school, some ramps had to be put up, and sometimes I felt a lot of pressure to walk and fit in. It was hard but mom always said, change starts with one person. I only had few friends that helped but after some time they stopped helping and I had to tend to myself. I had problems with a few kids that did not understand my situation or condition who gave me a hard time. During my last year of primary school, I achieved much more than any normal person despite the trips to the hospital and the number of days I missed, I walked out with a trophy for perseverance and best entrepreneur.
At the moment I’m attending high school and I am a grade 9 student.
In grade 8 I also had trouble fitting in and I did not have friends for the first few months of school. I eventually made one friend and she helps me where I need assistance. In grade 8 I also had challenges with the learners from my age group. They didn’t seem to understand my situation but learners in higher grades were more understanding and accepting. It sad as children don’t grow up with someone who is different. They don’t know how to help or some feel like I do not belong. The school is made with ramps and has an elevator when it is working to get me around from class to class.
I am now in grade 9 and I still experience the same problems with learners, however, I rarely let the fact that they chose not to accept and acknowledge someone that is different, bother me. I keep busy with my school work, I talk about my depressing days, and I love to listen to music and write poetry which helps me express myself.
I had to be carried up and down stairs some days.
I still have problems with access to school toilets.
The schools I attended were forced to be wheelchair compliant.
But fitting in with a wheelchair and being accepted is the hardest thing I have to deal with every day.
I am able but I am different but I do my best to fit in but I always wish that there were more people like me.
Thank you
Emily Zawe, aged 15 years old