Meet and Greet with Alley

I would like to introduce you to Ally, another adult with 22q11.2 deletion syndrome.

Over the years I have gotten to know about 22q not only from my personal first hand experience but by other people who I have connected with online. For people with a genetic disorder finding groups and common bonds can be a lonely process in the outside world but online it is easier to find others who have been on the journey too.  I want you to meet my dear friend Alley I hope you enjoy reading her answers to my questions as much as I had fun getting to know her. If you would like to be featured on a meet and great send me a email and let's connect.


When did you first get diagnosed with 22q11.2 deletion?

My parents learned when I was about 1 years old. After my surgery around 1, I lost some milestones and had to re-learn to crawl, walk and etc. That is when my parents learned.


How did you feel when you first learned about living with a genetic disorder?

My parents are not one to talk about it. We do and my dad tells me stories all the time, but there main thing was to make me feel as a normal child as possible growing up. Since I never personally had anyone with 22q11.2 around me it made it easier. When growing up and once I learned about it around 10 - I honestly felt like a burden to my family. I know the total it took a lot of them not just money wise for medical. It wasn’t until my late 20s I really felt comfortable with having 22q11.2


What symptoms do you have associated with 22q11.2 deletion syndrome?

Without looking at my big filled binder, I could not tell you all of it. I have one kidney missing on my right side. I did a cleft palate surgery. Eye surgery. Two heart surgeries.


What type of genetic test did you use to find out you had 22q11.2 deletion syndrome?

My 22q11.2 is not genetic. All my family members on both side of parents took the tests and came out negatively. I do not remember the test that was used since I was 1 years old when my parents found out.

Many parents want to know can adults with 22q live life and master life skills so I want know:

How old are you?

I will be 33 in April

Do you work?

Yes. I am working full time as a Para for ILC support behavioral room. I will be certified as a teacher this spring.

Do you drive?

Yes, since I was 16

How do you find support to manage living with 22q11.2 deletion?

My support system is amazing. I have my parents, brother, and family. I have some pretty amazing friends (most since 2nd grade)

Do you have siblings?

One brother

Is there anyone else in your family diagnosed with 22q11.2 deletion syndrome?

Nope as said above, my 22q11.2 was environmental

How do you get along with your parents and family members?

Like every family we have our moments and issues but yes for the most part we are a tight and close family

Do you live on your own?

No. I live with my parents. I did during college and with roommates when in my 20s. I am saving for my own place at the time.

Do you have plans to have your own children someday?

No, But someday.

Do you have a degree?

I have a BA degree in Liberal Arts, Master Degree in Elementary Special Education and planning for a PHD one day

What are your plans for the future hopes and dreams for yourself?

Once my boyfriend is done Army Special Forces training the next step is marriage. I will be done my teaching certification soon. Alot of my dreams are finally coming true after a long path. The next one is just to keep building our happy family and living happily.

How do you feel about talking about 22q I know we touched based but how do you explain to others what 22q is and how it affects you?

I am not a fan of it. I am not against it either. I will support it and others as well. I was born in Delaware and still grow up here. I never met anyone else in this state with 22q11.2 that is not from another state close by or far away (even if they moved here). The fact that my parents never let me use 22q11.2 as an excuse or to let it stop me from succeeding and my dreams has also put a mindset that to me its not as horrible as others make it. Yes we all have our struggles - just some are more private than others on sharing and not because they are a shame of it. I feel its a diagnosis not a disability. I rather talk about 22q11.2 personal one on one with someone than on a group based.


As for 22q11.2 affecting me?  

I would not deny that I have my own struggles. Making friends was a hard part in life and can still be. Trusting others is another affect - I either trust too much or not at all. Until my current boyfriend who understands and doesn't allow it to affect us - relationships were hard. I never told my jobs about it and barely talked about it during work with others. It does not affect me working wise. I do feel insecure at times with certain topics or things I know or others know I should know right away. At times I felt dumb even though I am pretty smart because of my insecurity. It can take me a little while for certain things but once I get it - I'm good. I think 22q11.2 affects everyone differently.


Is there anything else you would like to share?

The only advice I will ever gave anyone for families that have 22q11.2 is always show love and be there for that person. Allow them to be as independent as possible but help at any time. Know that sharing feelings might be hard. Allow them to grow into their own person. Do not overly protect and care for and push, but do not over not be part of their life. Let them know they are special but do not make a big deal over it.

Thank you for reading

Love Amanda

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