Dwayne Johnsson said " When you walk up to opportunities door, don't knock it… Kick that bitch in, smile and introduce yourself. "
This is a quote I've been living up to my entire life, i fight for what i want, doesn't matter if it's "impossible" to others, u can do what ever u want if u put your mind to it. However, getting the right help if u have a rare disease, that sure is impossible.
I've been asking for help the last 3 years, backpain, too short muscles after surgery's, not being able to straighten out my back etc, everywhere i turn i get the same words spoken back to me "u need a real evaluation and we won't do that here". To keep the story short, this has led to stress fractures, and disc herniation, this combined with everything else has led to the fact that i can't walk or even stand anymore, where did my life go? and why can't i get help ANYWHERE.
Ok, lets leave the complaining. Here's a fun story.
When i were six years old, i did a surgery on both legs at the same time, i had casts from my hips all the way down to my toes, and i just wanted to do what every other kid did during the winter, so i went skating, ( on my cast ) so that i had to redo my cats, 1 week later i wanted to go sledding, however, i only had a small hill close to my house, so i used my but crawling to the top, jumped in and began to go down, then i realized that i had to stop before hitting the house wall, so i slammed down my heals and used them to brake, which after a few times resulted in yet another recast, all the doctors laughed at me, telling me I´m a stubborn and positive little girl.
The point of this story is that we with XLH are extremely stubborn and definitely intend to have as much fun as everyone other kid.