About the Site

MQP.jpg

 

Mission Statement

 

To inspire and empower people affected by 22q11.2 deletion syndrome (22q) DiGeorge syndromeVelocardiofacial syndrome

I do so by sharing motivational stories on how to handle life and move forward by empowering people to help them begin to learn more about 22q11.2 deletion syndrome though my own personal experience.

22q can be manageable I can help you. That is where this website comes in.

I have compassion for others who are struggling while learning about the many health issues that come from having a genetic disorder such as the one my daughter and I have.

  The purpose of my website is to educate and advocate to help others outside of the 22q community understand what it is like to live with this syndrome. Giving people a look into what life is like for adults and children though mine and Bella's eyes.

My passion is to encourage other people with 22q and parents of children who are learning how to handle the many day to day challanges we as parents often face. 

I have taken the time to attend workshops, classes and conferences to become the best advocate as I can be for my daughter as I am a trained mentor on the national parent to parent organization I enjoy getting those phone call match ups and talking with other parents about how to look at this as a step by step process with out becoming overwhelmed and smothered by fear of the future.    Welcome to Mommies Quiet Place! my little place on the internet with my daughter and step kids can't find me.

On this site we share

 This blog is for those of us who are on the outside looking in.

We are so glad you found us.

I know you are looking for answers and have many questions.

I can't say I have all the answers to the questions you might have.

I have experienced being an active member in the 22q11.2 deletion community since I was diagnosed when I was 21 years old. I am 34 years old now. That is a long time and I stepped away from groups and such because I have equipped myself with a lot of knowledge and often find that I am sharing answers rather then getting answered to questions I have.  I formed my own tribe over at 22qmommiesquietplace it is a fan page on facebook for this blog it is 1,000 likes and counting. I am so thankful for all of you who are always so uplifting and supportive. Even if I don't get time to respond to all the emails and questions please know I read them all and do reply to every one of them myself.

My scary hard journey can be found under the “Our Journey” tab on this site. It is a sort story of the fist part of our journey. I am currently working towards publishing my own book and hopes to have a book in the stores one day. For now I will just do with publishing blog post filled with my random thoughts and sharing the ups and downs of life with the readers who stumble upon my blog.

Having seen 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. Through my first hand personal experience and knowledge of living life with 22q11.2 deletion syndrome. What I have done for myself, the things that worked and what hasn't worked for me. Please don't do anything I have done without first talking to a doctor. I have attempted and tried a lot along this journey l do seem to learn the hard way what not to do rather then what to do.  I share what works and what hasn't so you don't have to make some of the same mistakes I had made along the way. I keep it raw and real on this blog and I do not fluff up sometimes I don't even edit my post. (sometimes I am getting better at the editing before posting part)

I’ll show you tricks, tips, and share information about 22q11.2 or DiGeorge Syndrome (DGS). Its mind boggling that people assume we are all alike when genetics is the major factor here. Genetics makes it so this disorder is unique in so many different ways, in fact over 180 and counting to be exact. There are so many different things that can be altered in a person with 22q. There is no cure for any of it, this syndrome is a managed syndrome, and we treat what symptoms pop up.

Thank you for reading

Love Amanda