Personal Story:

Aryan Daryan

MPS II | Artist | Independent Living Advocate

“I worked to develop a positive mindset, identify my skills and talents, and present the right image of myself to a society that saw me as sick and incapable.”

My Journey

I spent much of my childhood and adolescence in bed due to illness. Because enzyme treatment was not available when I was younger, my condition progressed significantly. During those early years, all of my diagnostic appointments and treatments were managed with the help and support of my mother and father.

Despite these challenges, I continued my education and was recognized as a mathematics prodigy during my school years. At the age of 19, I achieved financial independence and was finally able to contribute toward the cost of my own treatment. After undergoing a difficult and high-risk surgery with many complications, I came to an important realization: my time is valuable, and I needed to pursue my goals with purpose and determination.

I rented a small room, transformed it into my art studio, and began living independently. I later organized my first solo painting exhibition in Tehran. Even today, while managing physical challenges such as hernias, I travel independently for medical appointments and cover my own expenses.

Challenges Along the Way

Finding Independence

Alongside the physical challenges, I also faced many emotional struggles. I experienced bullying and physical harm at school, and my first open-heart surgery as a teenager was an overwhelming experience. Following that surgery, I could no longer attend school regularly due to the progression of my condition and the emotional challenges I faced.

During this period of my life, I had to learn how to live with pain. I worked hard to develop a positive mindset, identify my strengths and talents, and challenge society's perception of me as someone who was only sick or incapable. My goal became proving—to myself and to others—that I could live independently and even support my younger brother, who also has MPS.

My first creative passion was music, but financial limitations prevented me from continuing that path. Instead, I turned to painting. I taught myself, practised relentlessly, and discovered a passion that continues to shape my life today.

Although I live independently, my mother still visits occasionally to help with household chores. If I had access to a personal caregiver, I would have more time to focus on developing my skills, pursuing my goals, and engaging more fully with my community.

Lessons Learned

Living with Independence and Purpose

Aryan continues to live independently, pursue his creative work, and manage his medical care while building a life shaped by determination and self-direction.