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May 1

My rare disability 22Q Syndrome !! Hello everyone my name is Justin G from Boston Massachusetts and I battle with a rare disability



22Q Syndrome is a rare disability I have it effects my heart and learning . And I am trying to raise an awareness about it on my social media because I think everyone gets to have a voice/story to share and I am not scared to share about my rare disability my goal is to spread more of an awareness!    hopefully If I get featured here it will help grow my following on Twitter and awareness! I also made a video a few weeks ago about my disability it got 174k Views and over 1k Retweets !  You all can follow me on Twitter here @syndrome22q. Due to my disability I have had many life threatening open heart surgeries at Boston’s Children’s Hospital I’ve been through some rough stuff in the hospital.  I hope one day I can be a big celebrity on social media and hope one day my  syndrome will be well known:-) I also wrote a song about how having a disability Is okay and I inspired tons of people that video went viral as well. It got featured on my local news stations and I got to perform my song  at a school in front of students  which I thought was so cool! Please help spread my Awareness !  Thanks -Justin


New Posts
  • Honestly, if I let myself get offended by every inconsiderate remark or uncomfortable stare, the past twenty seven years would have been miserable. Most days, I concentrate on what really matters, my truth. Pity isn’t the goal. Condescending tones aren’t necessary. Everyone has personal strengths and weaknesses. I am loyal, passionate, sassy, and disabled. My life is full of so many blessings despite what society portrays.  Growing up, I always knew I was disabled. Accommodations were often necessary in order for me to complete daily tasks. Even now, as a high functioning adult who is able to do many things independently, I still struggle with this disconnect between my body and my brain. As a little girl, I pictured my adult life to be more traditional and ordinary than it actually is now. While my current reality isn’t exactly what I anticipated, I’m sure the same can be said for able bodied adults as well. We can’t predict the future, after all.  From the outside looking in, it might be easy for people to assume that my biggest insecurity relates to my physical challenges. Only those closest to me know the truth. Cerebral Palsy is a label I have finally fully begun to accept, but it still doesn’t define me. Doctors always urged me to be mindful of my weight. My muscles are naturally weaker than those of my peers, and the ability to carry my own weight has been a major priority for as long as I can remember. Over time, the “priority” became an obsession that I’m not proud of. Body distortion is real and definitely contributed to personal issues with my image.  No matter how often my loved ones tried to help me develop a healthy relationship with food, I kept counting calories and making excuses for my horrible eating habits. The interventions in college weren’t enough to wake me up. Here we are, almost four years post grad. At 27, I can finally say that I’m embracing my curves and learning to respect my body. Moving back to my favorite city, enjoying the greatest food in the country, and reprogramming my approach to food have all positively contributed to where I am today. Admittedly, I’m not even sure what the number reads on the scale, and for the first time in my life, I am not consumed with my size. Instead, my focus has shifted to my sexuality. Around this time a year ago, I came out to my closest friends. Two months prior, I moved across the country. Looking back, I couldn’t be more grateful for the kind and supportive responses I received. Considering I confessed my feelings via text thousands of miles away, I wouldn’t have blamed my pals for being taken aback or hesitant to process the news. They made it clear, however, that our bonds would not be impacted by who I was attracted to or any other label that was part of my identity. Unfortunately, I still haven’t found the courage to tell my family, except for one cousin who is openly out.  Despite societal expectations, being single can be beautiful. Meeting “the one” doesn’t have to consume our lives. As a hopeless romantic, I love seeing others find their match. For years, I have been focused on the potential of next season. There is something so gratifying about allowing myself to be fulfilled with my current relationships. Not everyone’s happily ever after includes a spouse and that’s okay. This is the mindset I’ve worked so hard to create. It’s the level of personal acceptance that I’ve always strived for. Getting older and recognizing what I really want out of life has shown me that perspectives evolve. Growth allows us to blossom everyday.  Dating terrifies me. Maybe it’s the fact that I’ve never been asked out. Or the growing number of assault cases in our country. Still, I know that some of life’s greatest moments come from beyond our comfort zones. Seeing so many disabled adults in healthy and happy relationships through social media is encouraging though.  Expressing myself has been a therapeutic first step. Here’s to the possibility of new beginnings. 
  • Yesterday I went to my sons MRI results appointment..and for the 10th time that I been there since we found out he has cerebral palsy I left without any answer again!. This damn doctor laughs when she is explaining to me things..all 4 nuerologist that have seen my son's MRI say there is an injury to the right side of my son's brain but 1 says there is an abnormality on the left that to me makes more sense because he has broblem with the right side of his body. that also means that he got a stroke in my he needs to get blood work done to thicken his blood to avoid any other stroke. All this is all overwhelming and I just want to get out that little room we get put in and scream and cry because I hate having to see my children in pain...if I could ask for one super power it would be to live for ever to protect them and never make them feel's an everyday struggle being a mother. And on top of it all this he was diagnosed with autism a day after we found out he had cerebral palsy but I found out a week ago the doctor that did the testing was not eligible to do testing and is having his license they want me to get him tested again...we been living for an year thinking he is autistic but to me it seems it could be something his getting older his behaviors are getting worse...I got bitten by him two days ago because I try to hug him when his screaming or kicking when he doesn't want to go out the house and that has never happened before. I want to make life more easier for my son but I feel like I don't mainly because he has speech delays so it's hard to understand his needs..I am hurt with all this because I couldn't never imagine this could be happening to me or my children....I am Hispanic/Latina and all our families ever talk about is being "crazy" but nothing further than that. We know nothing else of any mental health problems... I have many stories to tell and I hope with time I can post them.
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