A body or a cage
A close family friend received a crushing diagnosis for both his kids, a rare disease. They started a research team to find treatment and created a foundation to support it for other rare diseases. As a child, I used to think that the human body had a limited supply of skin. After seeing pictures of skin layers in a first-grade textbook, I thought that every time I scraped my knees on the pavement a different layer of skin was revealed. I used to ask myself all sorts of questions. What would happen when I reached the last layer? Was it just one thin sheet of skin holding muscle, sinew and bone together? After that, would I finally unravel? The image of flesh escaping skinless gaps in my body made me develop a deep fear of falling and tearing my skin. I started living my life with my head down, carefully watching the cracks of the road, making sure I didn’t take a wrong step. Regardless of my caution, I still fell and fell often. Being so young, I just laughed it off and became known as the clumsy kid. As time went on, I continued falling, started struggling with basic movements and injuring myself a lot more. Eventually, my doctors realized that my health was being compromised by more than mere clumsiness.
At the age of five, I was diagnosed with hypotonia, a condition of low muscle tone that affects my large motor skills and makes certain bodily functions harder. I can walk and function at a basic level, but everything is paired with extreme fatigue and constant pain. For most of my childhood, I understood my differences, and quite frankly, I wasn’t ashamed of them. When I moved to India for four years (from ages 9 to 13), I played sports for hours and hours with my friends in the tropical heat. I got laughed at and we joked around about my rather obvious lack of athletic ability — but throughout it all, I was never embarrassed. While it was a lot harder for me to explain my disability in India (considering the societal habit of ignoring hard-to-describe circumstances), I always found it easier to simply live a normal life. Read more:
The siblings are t
he only two kids in California with this rare disease. You can find the story at https://www.cure-adssl1.org/our-story.html
Here is the community for fundraising page for research efforts: https://cure-adssl1-2022.raisely.com/