Donate to the Clark Family Campaign
November 2025
My name is Lucas.
I’m not actually writing this letter myself—but I wish I could.
My family is helping me share what it’s like to live with Fragile X Syndrome, and how your support can make a difference for people like me.
Some of you know me well, but for those who don’t, I’ll try to tell you a little about my world. Every morning, I wake up at exactly 7:00 a.m.—no alarm clock needed. My family has no idea how I do this, but I just know when it’s time. That’s my routine.
The first thing I do is send text messages to my friends and family—the ones who let me. I have to do this. It makes me feel connected and organized, like I’ve already accomplished something important before the day begins. (If you’d like a hundred texts from me each week, just give me your number!)
After that, my mom and dad help me get ready for my day program. They help me pick out my clothes, brush my teeth, comb my hair, eat breakfast, and pack my lunch. They tell me to hurry up a lot, but I really don’t like to rush.
I enjoy my program, but honestly, I’d rather be home in my room. The world outside can be loud and unpredictable. I like things the same every day. Surprises make me anxious.
I spend a lot of time thinking about food—especially fast food. I plan where I’d like to go, what I’ll order, and when. So when plans change, even a little, it feels like the whole world has turned upside down.
Talking is hard for me. My brain moves faster than my mouth, so sometimes my words come out jumbled or slurred. People don’t always understand me, and that’s frustrating. I wish they could hear what I’m really trying to say.
When I get home, I immediately change into a tank top. My skin is so sensitive that I can’t stand most clothes, no matter the weather. I even wear shorts when it’s cold outside—it just feels right.
At night, I go to bed at 9:45 p.m. on the dot. That’s my rule. Routines make my world feel safe.
But I also know that people are trying to help me—and others like me—have an easier time in this world. That’s where FRAXA comes in. FRAXA is working every day to find treatments and a cure for Fragile X Syndrome. A cure would mean people like me could talk more easily, understand the world better, and feel calmer and more connected. Then, maybe I could even write letters that sound like this all by myself, although I wouldn’t need to!
I may not be able to say it perfectly, but I want you to know: thank you for caring. Your support gives families like mine hope that one day, life won’t
be so hard for people with Fragile X.
Please help FRAXA keep going. Every dollar you give brings us one step closer to a cure—and to a world that makes more sense to me.
With love and gratitude,
Lucas
