FCPA Featured Patient – July 2022
My name is Randy Urbay, and I honestly do not feel like anything is wrong with me. Besides surgeries, therapies and hospital stays, I have had a normal childhood. I enjoy playing video games with my friends and going off-roading, boating, fishing, and traveling, especially long road trips in the winter.
My biggest challenge has been missing out on some events, holidays, and activities because I was either in the hospital or recovering from a surgery. My pets helped me so much, especially my dog Wallie, a special-needs rescue, who was missing one eye but was just like any other dog.
“I would tell younger kids that it is okay to be different. We are all unique and special. And being different isn’t that bad!”
My hobbies include working out and fishing. My passions are definitely animals, especially the stray and homeless ones. I plan to go to a technical school and learn how to fix mobile devices and tablets.
My greatest strengths are perseverance. My mom never let me use adaptive devices such as adapted scissors because she wanted me to at least try and not just assume I can’t do something.
I am unique because when people look at me they assume I am different and can’t do certain things. I enjoy watching their expressions when I prove them wrong. One time we were at an arcade and I was going to play the car racing game that you can play with multiple players, well the kids were all older than me and looked at me and laughed, I laughed much louder when I beat them in all three games!!
I would tell younger kids that it is okay to be different. We are all unique and special. And being different isn’t that bad!
A Mother’s Perspective
Elsie Garcia, Craniofacial Family Advocate
Joe DiMaggio Children’s Hospital Craniofacial Program
Randy was diagnosed with Apert Syndrome at birth. It was quite shocking, as I had a wonderful and uneventful pregnancy. I had never heard of a Craniofacial Syndrome, much less Apert Syndrome. Randy started therapy at a very young age. Due to Randy’s syndrome he had airway difficulties and his oral/facial structure affected his speech and eating. He did not eat solid foods until three years of age and did not speak in full sentences until eight. Thankfully, he now has normal eating habits, and his speech has improved so significantly that he regularly gets in trouble at school for talking too much in class.
“It really does take a village. . . . My best advice to new parents is to take it one day at a time. Do not compare your child to others with or without a condition. We are all unique and different, and that is okay.”
The early years were very difficult because I had no idea what to expect. However, I connected with other parents through Apert International and befriended many parents experiencing similar struggles. In fact, through that organization, we became great friends with another local family whose son was two years older than Randy, and 17 years later we remain friends and even travel together. Our families have enjoyed watching the boys grow up together.
Some challenges we faced included other children making fun of him and calling him names. Communication and openness have been the key to overcoming the stares and hurtful comments. His school has been amazing with inclusion and diversity, and thanks to their efforts, Randy has no self-esteem issues at all. It really does take a village.
A very proud moment for me was learning how well Randy had advocated for himself when he cut his finger badly at school one day. Though I was not there to witness what happened, his finger had been cleaned and bandaged when I arrived at school. We then went straight to Urgent Care, where his finger was assessed, cleaned, and x-rayed. Randy explained to the doctor that the webbed fingers he was born with made them difficult to x-ray. As his parent, I understand that I cannot always be there to advocate for Randy and explain his syndrome to others, but this experience showed me that he is self-sufficient and confident enough to speak for himself. I was very proud of him, and it brought me great comfort to learn that he was able to explain his condition and communicate so well with his healthcare providers.
My best advice to new parents is to take it one day at a time. Do not compare your child to others with or without a condition. We are all unique and different, and that is okay. Never limit your child. Randy was born with webbed hands and feet and after syndactyl release and a lot of therapy, I am proud to say that he is able to do almost anything others can do. It may be a little bit more difficult for him, but he is one the most tenacious boys I know, and he always finds a way to get things done.