Retrun to 22q Stories

You are here

When I first found out that I had the little known genetic disorder called 22q11.2 Deletion Syndrome my specialist, Dr Lax the dentist did a nasal biopsy. I have 4 older siblings right now in my family who are still trying to learn about me and understand what it is and why its so important in my genetic make up.  My second oldest sister is a Biochem major at Oregon State University and is really studying to become a doctor someday to try and figure out better tools to help overcome certain issues. I wasn't growing properly in my childhood so I had a medical aid to help with that. I don't know if this relates to other kids that have had the same problems as me but as I am getting older into my adulthood, I am learning more on how to get bigger. I have had anorexia twice and I'm trying to motivate kids and inspire kids who have the similar genetic make up as me.  But all that I've learned now is that you can set your mind to do amazing things for me that was Crossfit and getting in shape I love the gym! 
At the age of 2 I had a PDA repair of my heart where they placed a coil but a lot more happened before age 12. They found a 8mm hole so they placed a clamshell device but saying that I did almost die. Yes, to other parents out there it can be very hard to see their children going through some of the same problems other kids have with the same genetic disorder its really hard to determine if everything is going to be ok in the end.

Latest News

Upcoming Event

Spread the Word