This is Dorsey Ross’s story. Please respectful of him and his journey as he shares his story living with Apert Syndrome. Apert syndrome is a genetic disorder.
Learn about Apert Syndrome here https://ghr.nlm.nih.gov/condition/apert-syndrome
Where are you from? Tell me a bit about yourself. What is your name, age, and disease/invisible illness/mental health? My name is Dorsey Ross, I am originally from Richmond Hill, NY Queens, but currently living out in Lindenhurst NY Long Island. I am 40 years old, and I am an ordained evangelist/minister, and I travel around speaking at churches, events, about what God has done in my life. I have what is called Apert Syndrome.
When did life change for you? Life Changed for me when I was born with Apert Syndrome, which is a birth defect of the hands and the face. When I was born my forehead was pushed outward, my eyes and nose were pushed back into my head, and my fingers and toes were fused together meaning I had no individual movement of them. When I was born the doctor’s told my parents that I would be brain dead, and to put me into an institution. Thankfully my parent’s decided not to do that and to take me home. I have had over 68 operations throughout my lifetime, was bullied made fun of teased called Monster and freak.
How has your diagnosis changed your life? The diagnosis that I have, never really changed my life, because I never really had a life prior to this diagnosis since I was born with it.
Please describe the best you can a day in the life of you? I wake up in the morning, I can basically do just about everything I can on my own. So as I said earlier, I am a minister/evangelist, and I work from home. I am on the computer/facebook most of the day trying to make connections with pastors, organizations, trying to get speaking opportunities, to talk about what I have been through in my life. Depending on the day of the week, I go to church, I hang out with friends, I drive myself, even with the separation of my fingers and only having nine fingers. I watch TV, and go to bed.
What was/is the most challenging thing you have faced because of your diagnosis? I think their were probably several different things, one of the biggest was the surgeries, that I had to undergo. Having to go through 68 operations, was not an easy task, and was not easy to overcome by any means. The other one, would be having to deal with people who would tease and make fun of me, feeling isolated at times, when I was younger because I didn’t always have the close friends that everyone else did.
Do you find that you can keep up with others? This shouldn’t be can I keep up with others, but can others keep up with me. I don’t know if it’s so much now, but I remember when I was younger a lot of people would say hey hold up, we need to catch up. Because I would walk so fast, they would have to catch up with me. So yes, I think others can keep up with me, and I can definitely keep up with others. I still do this day, play football, and bowling, baseball, when I can. do anything and everything that most other people can do.
What would you tell others living with your diagnosis? Don’t give up, don’t let others tell you, what you can and can’t do, figure that out for yourself, don’t let others limit you in the potential that you have.
What would you like to tell others that don’t live with a similar diagnosis? I would say the same thing as above,
What have you learnt on your journey? I have learned that people can be cruel, that the world we live in especially when it comes to people with disabilities or other issues, can be harsh. It’s unfortunate in the world that we live in, that their is not more love that is shown to those that have disabilities. Though with me being a Christian I have learned how to forgive, and learned that, that is just part of the world we live in where people are going to be cruel, and harsh. But I know that God Loves me, and that He has a plan and a purpose for my life. I can’t give up, as often as I wanted to, I just can’t I come this far to give up now.
Is there anything you would like to add about your journey? I am grateful for my friends and family members who are with me now, and who are standing with me through this journey. Who are walking it with me, and have the best encouragers to me through this journey.
Thank you Dorsey for sharing your story. You truly are a grave and inspiring soul. To have gone through 68 surgeries and continue to move forward proves you truly have a strong spirit.