This charity helps families like mine connect with resources and their families. This can be an isolating diagnosis- without support. Thank you!
Great organization for our 22qt’s.... my 22q child has met many great families in this group.
This organization does so much for the 22q community. They provide as much help and advice as possible as well as plan get togethers for face to face support as well as online. They are more than a group thanks to them. This community is a family.
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.
22Q Texas has made a life changing impact on our family. We now know we are not alone and we have gotten to experience the gift of being connected and supported.
My daughter is a 22qtie, and we’re ever so blessed to have found this nonprofit in TX. We love the members and the board. They’re all our new 22q family!
Great Non-Profit! All donations go directly to supporting kids diagnosed with 22Q. I couldn’t ask for any better support, networking, and information in finding treatment that works to help our kids! I highly recommend this group to anyone looking for a cause to support!
This group is very supportive of anyone with questions, needing advice, or just someone to listen and commisurate with. I’ve learned a lot and know my family is not alone in this. Very active throughout the state.
Our family found this group 9 years ago. These are the best people. The yearly family retreat is such a blessing for every member of the family. The feeling of family lets you know you are not alone. Nothing but love.
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 with 22q deletion syndrome and we felt alone, discouraged and frustrated. We battled this on our own for a year before we found 22qTexas. It was here we found support, others who understand and direction of places to go to find the medical support we needed. It was our lifeline. We have enjoyed meeting with other families several times a year. We have a forum on line where we can ask questions and receive support from other families that have been there. It is here that our daughter can meet other kiddos with the same challenges she has had to face. It's a family. Our life's challenges are more manageable with the support we have found with 22qTexas.
I am so thankful that 22Q Texas has been a part of our lives since our daughter was a newborn! This is such a wonderful organization, they are truly our second family. Each of us looks forward to seeing our 22Q Texas family, especially at camp! That is the highlight of our year. In 7 years, we have never missed a May zoo event and had a blast with everyone at Morgan's Wonderland these past 2 summers
They have provided so much support for our family. The retreat they put on each year has ministered to our families in ways we can’t even begin to express. My daughter has had the opportunity to meet other kids just like her and it gives her such a sense of belonging. As a parent I’m appreciative of getting to learn from other parents and from the great speaker that this organization brings in. This is life changing work that is being done here and I know it will only continue to grow!
22Q Texas is an amazing organization that not only provides support for families they also are seeking to provide awerness to the community. Their efforts are helping our kids have a better future! My daughter knows she is not alone and now knows so many other families with 22Q and I love the way this group has come along side us to help encourage and educates us as a family. I also can not say enough good things about their 22Q retreat it's a great time to connect with other families!
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.
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.