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.
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.
We love this organization. They are completely volunteer run and provide support for people and families of people with 22q. We love the camp they put on every year.
My daughter and I really enjoy the camp this group puts on every year. They have also been very helpful for us finding local resources that have knowledge of the syndrome.
This non-profit truly made the difference for our family when our son was diagnosed with 22q11.2 deletion syndrome. I am continually impressed with how much they do for all of us, being a group of VOLUNTEER 22q moms! They are a life changing support group that really helped us find the positive energy to accept an enexpected and scary diagnosis.
When I found out my son had 22Q, this rare syndrome I had never heard of, I was terrified and devastated. This nonprofit was a god send when I found it. There was resources, information, and support. I got excited about the community we had found and started to have a better idea of what this was and how to handle it all.
My daughter was DX in 2003, found this group 9 years ago, and I must say we are like family. The biggest event every year is our family retreat. You meet so many new families. There are speakers they also have family breakout sessions where you are both learning and teach either. It is amazing.
Our daughter was diagnosed at 2 yrs with 22q. I think my first thought was now I know, second was where to start and what to do. We found this group 7 years ago, and it has been life changing and life saving. I have found no matters what you are going through with your child, someone in the group is either going through it or been through. I can't imagining having these people and group in our life.
Review from Guidestar
This organization is so helpful with information and events for 22q
This group is amazing at providing information and support for families with a child diagnosed with 22q. The annual retreat brings families together for education and fun!
This group has been a lifeline for our family since my granddaughter was diagnosed. The information, support and resources we have received have been essential in helping our family navigate the many hills and valleys of having a 22q child. Giving us opportunities to meet each other at retreats and 22q at the zoo is amazing!
Awesome organization that we are thrilled to be a part of!!
This is by far the best organization for children with 22q. The board members go above and beyond to help you any way they can.
22q Texas has been a life saver for my family. We were lost once our daughter was diagnosed with 22q. We felt all alone and lost. It was not until we found the organization that we began to gain knowledge, support and most of all love. We have know gained another family. We value this group so much and hope that we can can give another family the same.
Our daughter Abi was diagnosed at age 4 after years of doctors not knowing that all her issues were connected. We were given information to 22texas and our lives have not been the same. This group is not only for information this is a connection to a family. One that understands what we struggle with. A family that supports each other and makes you realize you are not alone. We love being part of this group! We look forward to our retreat because it's the one time a year you don't worry about anything! Just being loved and supported by your family!!!
This organization has opened their arms to my family after finding out my son was diagnosed with 22q deletion. They’ve answered every question and assisted in every way. I’m so very thankful for finding them!
Since my son was diagnosed 3 years ago at the age of 7 I have turned to this group so much for answers. The group is so supportive and quickly call to action when help is needed. This is a chromosome abnormality that needs more recognition in the community so these kids/adults are helped with daily needs.
Just when we felt so lost so many unanswered questions we found this organization! We immediately were welcomed and began networking to find the proper and knowledgeable care for our daughter. This organization is lead by a great group of people whom dedicate their time to help families like mine! It’s been 3 years since my family has been a part of this group and we continue to grow closer.
The experiences that my family shares with this group are priceless. No where else is my 22q kiddo deemed normal. No where else am I surrounded by people who understand the path and trials of having a special needs kiddo. No where else can we feel so at home. We will keep doing what we are doing thanks to the support we receive!!
I was so overwhelmed and looking for help in any way when this group found me about 6 years ago. My daughter was diagnosed at 3 wks but she had never met another person dealing with the same diagnosis until the first zoo event. We have found so many new relationships through this organization & I am beyond proud to serve on the board now. It is truly amazing to see the lives that have changed thanks to the work done by this group. It's very exciting to see!! Looking forward to see what the future holds.
22q Texas supports families in Texas and beyond affected by the second most common genetic disorder - 22q11.2 deletion syndrome (also known as DiGeorge or Velocardiofacial syndrome). It provides information, resources and support so that families can achieve the best possible outcomes! 22q Texas has let our child know that he is loved and supported beyond his own family and he and we are not alone.
I found this organization by chance and have been blessed ever since. The leaders are always available to answer any questions and always provide news and resources as they learn about them. Thank you 22QTexas
I was going through a divorce just months after my infant was officially diagnosed with two genetic disorders, one being 22Q. My world was in a tailspin. I spent months researching my little one's diagnoses. I came across international zoo day and began to cry because I had missed it by a couple of days. I felt so alone. I had been off social media for almost a year when one day I just searched for 22q. I found VCFS Texas/22Q Texas. I was immediately welcomed with warmth and encouragement. I missed the following international zoo day due to inclement weather. I was disappointed. I finally had the opportunity to meet members for this support group at the annual 22Q camp. We loved it! I get emotional now just thinking about the love and support I felt. This organization is wonderful. The organizers are personable, passionate, knowledgeable, and so supportive. I am now a single mom but the support I get from this organization is priceless.
~More than appreciative Mama
Review from Guidestar
This is a group run by individuals who have a clear cut understanding about what life with 22q is about because they are living that life. This group has helped so many people with different issues as well as help the families connect with medical professionals who understand the needs of the community they are serving. The help they provide is not just for the parents and adults but also the young kids and teens who are either the siblings, cousin, or the the person with the syndrome. They even reach out to members who are in the area of an incident (whether it is one of violence or natural disaster such as Hurricane Harvey or The West Explosion). They work to not only help the families but spread the word about the syndrome so others can be educated and find other families that need the support that this group provides.
This group work hard for not only the individuals with 22q but also their families.
Such a special network of supportive families. We cry together, lift each other up and learn from each other. Invaluable!
This group has been absolutely incredible. The support we have received continuously blows us away.
22q Texas has saved me. The group of men and women behind this group will never know the depths of my love for them. We are about 6 months into the journey with 22q as my daughter was diagnosed at the beginning of the year. I have made many friendships, learned from veteran families/ shared stories, tears & heartache with so many of these beautiful people. I can honestly say that life will never/ would have never been the same without 22q Texas.
Thank you for everything you do. ❤️
Review from Guidestar
This group has helped my wife and step daughter find support and to help me be more informed
This is a really great group that ya actually grown outside of Texas. We have found that those families had no support in their areas.
At the scariest time in my life when all of a sudden I had no idea what my sons future would look like, this nonprofit group gave me support that I desperately needed. I had people who knew what I was going through, and could answer questions no one else could. They also gave me a purpose of good from one of the worst things a parent could go through. I realized if I was involved in this great community I could have an avenue to help others and raise awareness for a genetic syndrome that desperately needs to gain attention so other children will not go through their lives undiagnosed.