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cragar

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2 reviews

Review for 22Q Texas, Dallas, TX, USA

Rating: 5 stars  

Our son who is now 8 was first diagnosed with 22Q11.2 deletion at the age of 3. The day we took him in for genetic testing he had a full blown seizure on my shoulders and I knew something at that time wasn’t right. You see for years my wife suspected something was wrong with Sage but I was the dad who thought nothing was wrong with him it’s just part of him going through his childhood years. When he was diagnosed my wife immediately started doing research and I still thought nothing was wrong with him. Well one day my wife was on Facebook and saw a group about 22Q families and started reaching out to us. One of the first to donso was Suzi Beall Shaw who invited us to a retreat for 22Q families. I quite frankly didn’t want to go because it cost too much and still I thought Sage was normal. We went without my approval to this retreat. I will never forget the Saturday we were there walking down this ole dirt road to check on my daughter because we didn’t know any of these people. As I rounded a turn in the road I heard a lot of kids laughing and talking and when I saw those kids that’s when it hit me. All those kids looked just like Sage. Sage to us touches the lives of people he comes in contact with. He is a special gift from God and without this group we would’ve never made it. We are one huge 22Q family.

Role:  Client Served
 

Review for 22Q Texas, Dallas, TX, USA

Rating: 5 stars  

As a father I always thought my son was going through the typical fit throwing that a (3 year old) at the time goes through. My wife always thought there was something different about him but I was the one in denial who said nothing is wrong with him. Well after genetic testing and a full blown seizure in my arms we found out that he had DiGeorge syndrome or 22Q11.2deletion. We had no idea what that was or what it meant for him and so my wife found the 22Q Texas group on facebook. They were having a retreat up north of McKinney for all the families whose kids had the same syndrome. I did not want to go because my kid was normal and because we did not have the extra money to go. Well we went and all it took for me was one long walk down a dirt trail to see all these kids who looked just like our son and at that time it hit me like a ton of bricks. I knew at that time what he had and has gone through he cannot help. This group means the world to me. We have all laughed and cried together. It seems as though we continue to learn about this syndrome more and more everyday and the 22Q group is necessary in information sharing as well as we all consider ourselves one big family.

Role:  General Member of the Public