See Me Fully: Living with White-Sutton Syndrome and the Right to Be Heard
Ashley Pittman
State: Colorado
Congressional District:
Diseases
Rare Disease
Issues and Challenges
Ashley Pittman has encountered: Access to Expert Providers, Access to Medicine, Medical Records Access, Mental Health Access, Rare / Underserved Disease, Abuse (Mental, Physical, Elder), Discrimination (nonmedical), Gaslighting, Legal
My Story
My name is Ashley Pittman, and this is my story.
I am a young girl, age 17, who has been diagnosed with a rare condition called White-Sutton Syndrome (WSS). It’s caused by a mutation in the POGZ gene and affects how I think, feel, and understand the world around me. I have challenges with communication, sensory processing, focus, and emotions. These things are not always easy for me—but they’re a part of who I am.
For a long time, doctors and teachers didn’t really know what was going on with me. My mom knew something wasn’t right. She took me to specialists, asked for tests, and tried to get answers. But instead of listening to her, people blamed her. One doctor even used a hospital visit as a reason to take away her right to make decisions for me. That doctor didn’t know I had WSS. And he didn’t know that my dad had refused to pay for the genetic testing that eventually gave us answers.
While all this was happening, I was taken away from my mom. It hurt. A lot. I didn’t understand why, and it made me scared, confused, and sad. I also experienced things no kid should go through. The Child Protection Ombudsman even found that there was emotional and physical abuse by my father, who now works with the Colorado Moving Forward Party fighting for civil rights, but he ignored mine. No one at UC Health added my abuse, my trauma, nor my lack of assessments in my IEP at school to my medical file, nor did UC Health collaborate with the doctors treating my emotional problems caused by being separated from my mom for years. No one asked how I was feeling or made sure my care took these things into account.
Now, I take medicine for ADHD and anxiety—Zoloft, Kapvay, and Focalin XR—but my rare disease is not listed in my chart at school or at UC Health. The trauma I went through isn’t there either. That makes it harder for doctors and teachers to help me. My school doesn’t have a plan that matches my diagnosis, and no one from UC Health told them what I need or worked with my other doctors or therapists.
I’m not the only kid this has happened to. My mom’s partner’s son, William, also didn’t get the help he needed. He had a traumatic brain injury that wasn’t diagnosed properly, and no one looked deeper into what caused it.
Even now, after everything that’s happened, I feel like the adults in charge of helping me still don’t see the full picture. My mom has tried so hard to bring everyone together—to make sure all the doctors, therapists, and teachers talk to each other. But that hasn’t happened yet. And that means I’m not getting the full care I need.
All I want is for the people who are supposed to help me to see me for who I really am—not just a list of symptoms or a kid with a rare diagnosis, but a person who has been through a lot and still shows up every day trying to do her best.
Please make sure my care reflects all the parts of me: my medical needs, my feelings, and my past. I didn’t choose to have White-Sutton Syndrome. I didn’t choose to be taken from my mom. But I do choose to speak up now. I hope you will listen.
Sincerely,
Ashley Pittman
My Motivation and Inspiration
I want to speak up because I care about kids like me. I know how hard it is to feel different and not be understood. If my story can help doctors, teachers, and even other families learn more about White-Sutton Syndrome, then maybe other kids won’t have to go through what I did. That’s why I’m sharing this—because I want things to change, not just for me, but for everyone.
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