My son was diagnosed just before he turned 3, just one year ago. Not a diagnosis we wanted, but finally it all made sense. The hoarse cry at birth, feeding difficulties, weight loss, low tone, PICU admission, nasal regurgitation, seizures and hypernasal speech. We had a reason for all of these obstacles. Now we needed answers. With 22q being so underdiagnosed, it is a challenge to find Doctors who have any knowledge in treating the syndrome. Like so many other parents, I turned to social media and the internet. 22qties unite has been so informative and reassuring to me as a parent now having to cope with this diagnosis. Just knowing that we are not alone and there is so much support has made this journey a little easier. Thank you for all you do in educating and continuing to raise awareness.
My son Thomas was diagnosed at 6 days old with 22q deletion syndrome. we went from a heart defect...to having a genetic syndrome in a matter of days. I was shocked sad mad confused. I researched and freaked myself out. Looked on Facebook for support groups and came across 22qties Untie. I am so happy to not feel alone anymore and not afraid of what 22q has to bring us! 22qties is the best they work so hard on spreading awareness, getting their events organized. We are forever grateful. Looking forward to the next event after attending 22q at the Zoo! It was so fun despite the rain I'm glad it came out to be such a great turnout! I enjoyed meeting other 22qties. I sat there at our table and I told my husband "these kids are so darn special, they have this spark in em ... As I began to tear up. These kids are amazing. I'm so proud to be part of the 22qties unite family ❤️❤️❤️
This was our first time participating in an event supporting our sons syndrome... he was diagnosed at 6 weeks old with the 22q deletion... we had fun at the zoo event despite the weather lol... so comforting to be around other families going threw similar situations... we look forward to participating in future events and making new friends
My 12-year-old daughter has 22q11.2 Deletion Syndrome. Sometimes she feels different and sometimes, as parents of a child with a not well known condition, we feel alone. Often times we have had to "teach" friends, teachers, nurses and even doctors what having 22q means. 22qties Unite is an amazing group that helps us realize that we are not alone. My daughter loves feeling apart of this cool group of 22qties! At the most recent event, my daughter told us "Good thing I have 22q or we wouldn't get to have this fun day!" :) Talk about changing the narrative and making what might be considered a disability feel like a super power!! Thank you 22qties Unite!! :)
Eight months before this organization was founded we discovered that our daughter had 22q. All those months we as a family felt alone and no one to relate ourselves to. We discovered this organization a year ago and have tried to attend all their events. Our first official event was the 22q Family Day at the Park and felt very welcomed. So comfortable that we continue to attend their events; there we get to meet other families and have gathered more information about 22q and know that we are not alone.
When our son was diagnosed with 22q we were lost and didn't know what to do. This organization gave us some flyers about the syndrome and we were able to talk to some of their staff who put me and my family at ease. There awareness events are very informative and also give us the opportunity to meet other families going through the same thing we are going through. Thank you so much 22qties you and your staff are a blessing to us families.
My daughter was diagnosed with 22q after her vsd closure at 5 months old. She is now 18 years old. Most days can be a struggle but she makes me proud xx
My son has 22q11.2 micro deletion. He was diagnosed around 2 years old and I looked and looked for ways to get involved in spreading awareness about this syndrome as it seemed no one had ever heard of it. I ran into this organization and let me tell you this is an amazing organization. They are knowledgeable. Understanding. Accepting. Helpful. Not only that but they are all for support of our 22qties and I absolutely love that!
Our son has DiGeorge syndrome and this page has really been helpful in knowing we are not alone in certain situations! Very informative!
My daughter has DiGeorge Syndrome and this page has really helped me with information. It's good to hear others stories.
These people and company is a great place to get information and learn about 22q. They are a great support
This Nonprofit organization has helped me understand my daughter's condition since day 1. I had in the beginning talked to someone with this organization years ago when my 9 yr old was first diagnosed with having 22q 11.2 deletion. I was able to read up on this genetic condition and asked questions when i had any. This organization is a huge help for anyone wanting or needing information about 22q.
This nonprofit organization has really helped me understand the needs of my loved one.. they hold amazing fundraisers that are not only family friendly but also very informative. Thank you 22qties for everything you do for families like ours
22qties Unite was formed in 2018 after our son Ethan was diagnosed with 22q at the age of 2.5yrs in 2015. Ethan spent a month in the NICU and was seen by multiple doctors and specialists who couldn’t pin point a diagnosis. Frustrated, I began doing my own research on Ethan’s symptoms and asked for a simple microarray test in which finally Ethan became properly diagnosed with 22q DiGeorge Syndrome. Ethan’s primary care givers had never heard of DiGeorge Syndrome so they were unable to properly educate me on the syndrome, so I turned to Google which didn’t make it any easier. We wanted to give our son the proper care and needed someone to help guide us, we felt alone. We were able to find a few resources online, but nothing local as we continued to learn about DiGeorge Syndrome. We made it our mission to learn as much as possible about 22q and help support other affected families who might also feel alone as well as help educate all medical professionals in the general practice field who have never heard of the syndrome. We are striving to make a difference for our 22q families, those newly diagnosed as well as families who have been living with it for years.
I love working for this non profit. I am a parent of a child with 22q. When I first found out of my childs condition , it was hard to find information or support. When I heard my friend was creating this non profit, I jumped on the opportunity to help out. I enjoy creating events, meeting new families that are going thru similar situations, and connecting with professionals to help with the cause.
22qties Unite is such a positive organization in the 22q community. Our dedicated volunteers and board members are very compassionate, caring, resourceful, and knowledgeable about offering 22q support to our affected families. We provide support, awareness, educational resources and financial assistance to individuals and families affected by the 22q11.2 syndrome. We hold 5 annual awareness events annually to bring our 22q families and communities together. We hope you will join us in our journey.
Thanks to 22qties, We as a family are able to cope and understand our son's syndrome. 22qties provided us an opportunity to meet other parents and families going through the same situation we are dealing with. We had the pleasure of attending a few of their awareness events and had a fantasic time. They made our family feel like they have known us for years and were very welcoming. Thank you 22qties for all you do for our families.
Kids will always come first and this organization is all about them. The staff and volunteers are amazing and wont hesitate to help a family in need. Some people spend a lifetime wondering if they made a difference, this organization doesnt have that problem.