Further information

I didn't give much of an explanation as to what DeGeorge syndrome or 22q.11.2 deletion is in my last post.
I will continue to try to add information as I go. It took us a while to fully understand it, so we will do the best we can.

Please keep the questions coming, it will only help make the blog better and answer an pending questions you or others may have.

DeGeorge syndrome is known by other names but the most common is 22q.11.2 deletion. It is as it states, the deletion of part of the 22nd chromosome. It has a different effect on every person that has this particular deletion. Some people would never know that they have it unless they are tested while others are very severe and need constant lifelong assistance.

This being said, it doesn't seem that you ever have all the answers as to how things will turn out, but hey... I dont know how things are going to turn out for me, so I guess it evens the playing field a little bit.

What do we know about Aine???
1) Her heart is considered on the Very extreme end of the spectrum
2) She will need some time to "catch" up to kids her age. It's kinda hard to learn about muscles and how to use them whn your in hospital bed for the first 3 months of your life.
3) she Will need additional surgeries on her heart. How many? We don't know
4) She is calcium deficient
5) She can not eat by mouth, must use a g-tube and only time will tell if that will change

What do we Not know about Aine???
Way more than we know.
****How the deletion will affect her in the future
The problem with this answer is the list is so long that it is hard to list all the possibilities & since it is easier to deal with them as they come to the light we have chosen to not think about the list of "could be's".

Where do we go from here?
We continue forward, spread information and knowledge to those that are interested in finding out more & cherish the time and support that we have.

This is just a small insight into the deletion, I will continue to add more as I can & will see if I can add a
Website which is very insightful. But as I said earlier, please don't hesitate to ask questions. None are too small & they all deserve to be answered. The contact button will go to my private email, so ask away.

Thanks Again for your continued support,
The Caseys