I am a 35 year old with 22q I am a blogger I also have a 10 year old who turns 11 on the 27 here is my website look at the what is 22q link there are links to resources there https://www.mommiesquietplace.com We had me tested after my father tested positive when my brother tested positive and then my sister tested positive and my youngest brother tested positive all for 22q11.2 deletion syndrome. Mine was so mild and I have a different mom then my siblings I wasn't tested until I was 21. I had my daughter at 24 and she tested positive as well. The website I created because like you I couldn't find much info and support was hard to come across for adults who have it. I hope this helps a little. On top of 22q Bella has mild form of cp do to complications I endured during labor.
This is our journey right here on our website. I hope this is helpful and if you found it helpful please pass it on to someone else who is just doing the genetic testing and waiting results or has gotten their test results. Social media has been the best form of support I could ever have asked for. There are a few bad grapes who want to think what they will about adults with 22q but it does not effect all of us in the exact same way. Each of us have different set of characteristics from our parents and support and environmental factors also have made a difference. Awareness is out there more research that is accurate needs to be passed around from people who experience 22q first hand. This is just one of many stories.
There are parents I have come across who have had everyone tested and they have only one child who has it and that is called denuvo. Random chance of the genetic draw. With genetics it's like a nasty game of Russian roulette you never know what you are going to get. In my case I could have another child and with the 50/50 chance of passing it on I might have a child who does not have 22q. Then there are fertility options I can consider or adoption all very expensive treatments. I am content being a step mom to 3 young adults and having given birth to my daughter 11 years ago. I am content where I am at and look forward to having more date nights out with my hubby now that Bella is at the age where she is not as dependent on me. I been lucky enough to have friends and family watch her I have never had to get a babysitter. I am in a new phase in my life and I am able to take the time to focus on my writing that's what I choose to do with my time.
I want to thank everyone who has read and followed along my blog all of these years and kept up with the ever changing website. This one is finally it and is here to stay put. I started this website as a blog over on blogger as it was just a place for me to journal out my thoughts. then I had to invest in a domain as other's started to copy what I was doing too. There became a time and space where people were competitive over who knows more and that's why I pulled away from support groups online. I am part of only three really good ones., The awareness is out there research and funding and providing support services to family's like ours while I have not come across that many. That's why I am now stepping up my website game to help others because I know what it feels like to go the journey alone and feel like you are the only person like you that is out there.
If you are looking for support and kindness you have come to the right place.
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