Hello there, it is nice to see you here on the website.
I know your looking for answers and have many questions. I can't say I have all the answers to the questions you might have but I can share with you what I have done for myself what worked and what hasn't worked for me. I can share my first hand personal experience and knowledge of living life with 22q11.2 deletion syndrome.
Blogging is probably the best thing I do for myself. Through my blog, I've made connections with other parents, found answers to difficult questions, and gained the support I can't always find in real life or in online support groups. The second best thing I do for myself is reading blogs written by other parents of kids with special needs. The third best thing I have done is I have taken parent mentor training and advocating training I have connected with strong amazing parents, family and formed new friendships locally and internationally that will last a life time.
I have equipped myself with knowledge from being an active role in the 22q11.2 deletion community since I was diagnosed when I was 21
My scary hard journey is found on this blog on my blog Our Journey
I am now 34 and have seen first hand the good bad and ugly side of living life with this uncommon disorder.
I share the joys as well as sorrows of living life with 22q11.2 deletion syndrome.
check out the links below
first list is a list of only a handful of people who I have met along this journey living with 22q who also have 22q11.2 deletion syndrome.
I have met so many amazing parents of children with 22q and plan on adding more stories.
If you would like to have your story featured on my website visit the contact me page and leave me a message.
If you like comment, share and subscribe to my blog posts to stay up to date on our journey.
Welcome to our website blog and to our YouTube channel