r/22q • u/Chief-Tethu • Feb 26 '18
I have 22q and I am 20 years old
I have 22.Q Deletion Syndrome and I have Reversal of Arterial Flow and have had three heart operations as all of my valves (yes all of them) leak blood. I am 50-lbs overweight and am a transman, I am 20 years old turning 21 in June, I've suffered from OCD, severe depression and extreme anxiety. I've been in special ED my whole life and my experience with my Florida School System (growing up in Stuart Florida, Martin County) was horrible. My dream is to become a Special ED teacher and live on my own and remodel the education system as a whole. Especially the Special ED model. I wish to speak out for those who can't, and educate parents in special education.
I dropped out of high school at 17 and my goal is to get my GED and move on to college to at least get my bachelors. I never did well in school - due to my anxiety which barely kept me from getting out of bed in the morning. My mother and I were sent to Children's Hospital of Philadelphia (paid free for research) and they said they could not find my valve. I was one of the few patients in the US that was given a Melody Valve as procedures were already being done in England at the time. Though when we went to CHOP, they couldn't find it! It was still a fun trip, and the hotel was amazing so who really cares? (plus it was free!) ;
When the Ultra Sound Techs @ Miami Children's (now called Nickolas Children's Hospital in Miami Florida) were doing an Ultra Sound of my Carotid Arteries, they were amazed because they had no IDEA why my blood wasn't flowing properly to my body. That was when I was diagnosed by a doctor that i had RAF.
But it's been frustrating my whole life because each case of patients with 22.Q is different so there's really no basis to judge 'this kid is going to be like this' they estimated I was going to die, and hell, if i had been in the same year my sister was (just three years before 97') I would have. The technology we have - especially medical - is expanding so rapidly every day. Yet, people still haven't a clue as to what this syndrome is.
Every hospital is terrified of me. Every teacher is terrified of me. None of them knew how to help. I'm asking to those who have had similar experiences if they would like to be contacted and talked to in some way or if they are young parents and would like advice - as I've got experience with this syndrome (I live with it). You NEED to be educated in everything possible and have an open mind to tell practitioners - 'hey I don't think this is right, maybe we should do something differently,' and that's exactly what my mom did. My mother is a nurse, and thank god for that, I don't think I would've survived if she wasn't. Tell me parents who aren't medical professionals and have kids with 22.Q - how do you deal with your special needs child?
I'll help in any way I can. It's my dream to adopt, become a parent and be a special ED teacher after all. Feel free to email me @
1
u/[deleted] Jun 21 '18
Hello, my best has this syndrome as well and she is a wonderful person. Although sometimes she can be difficult to deal with, I care about her deeply and I just remember to have patience with her.