Welcome to The Family

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Dear 22q Family,

As we open our doors, we wanted to let you all know it is our mission to serve you, support you, connect you, and guide you.  We are excited to have the opportunity to be a place that you can turn to and a place to rely on.  The journey through a 22q diagnosis can come with many challenges and worries.  These worries have plagued all of us at one time or another, but there are two things that can help us in overcoming them: education and connections. 

We believe that by educating both ourselves and our medical professionals, we can work to create the best quality of life for our loved ones diagnosed with 22q.  Preparing families with the necessary foundation of medical information will allow you to not only be your family member’s advocate but also be the expert even in a room of medical professionals.  I have never stopped researching, learning, or sharing about 22q11.2 deletion syndrome and will continue to do so in order to best serve the community.  In addition to educating the 22q community and medical professionals, educating teachers on how best to meet our children’s unique needs will remain something at the forefront of our organization.  The 22q Education Station will remain our free service to families needing support navigating the IEP system in their school.

Early in my son’s life, I was consumed by the doctor appointments, therapy sessions, medicine schedules, and endless amounts of extra time that needed to be devoted to my son.  But as time went on, those minutes were spent more on making connections with other 22q parents and listening to their stories (while sharing my own).  I found myself joining more social media support groups for particular symptoms my son was having.  I found comfort and support in those groups, more than I could have ever received from a doctor or therapist.  These parents had more or less been in my shoes and shared experiences that my close friends and family hadn’t.  It is often a rather isolating experience caring for a special needs child, and we hope to eliminate much of that isolation.  22q has changed our family forever and although there are many uphill battles, the good has FAR outweighed the bad.

Additionally, we feel it is important to create connections not just between the parents of children with 22q, but also between those who have been diagnosed with the disorder.  We understand that 22q is a lifetime diagnosis, so connecting individuals with others similar in age and experiences will be a vital component to our organization.

I truly believe knowledge is power and through our programs and community connections, my hope is to instill the power into each and every one of you.  It may take a village to raise a child, but it will take a global “family” effort to truly impact the lives of those affected by this syndrome.  

We wouldn’t be in the position to do all of this without the generous and overwhelming support of Ryan Dempster, Michelle Breedlove Sells, and Amber Simons Klimek.  The Dempster Family Foundation was the first place we turned to after learning of Cohen’s diagnosis, and for over 2 years provided us with so much comfort and support.  They’ve done so much for the 22q community, and as we carry the torch that they’ve passed on to us, we hope to make both them and the rest of the community proud.  It is an honor for us to be in a position to be for you what the Dempster Family Foundation was for us: a source of support, information, and inspiration.

Sincerely,

Lindsey Garcia

Executive Director, The 22q Family Foundation

Comments

My daughter was diagnosed with 22q at 4 days old at CHOP. She is now 19 and I am desperately looking for resources and also other teenagers that she could connect with.

At 22 years of age I have just found out my brother was diagnosed with 22q. My parents are immigrants and never properly explained what was wrong with my little brother. He is now 18 and this whole time I thought the only issue he had was the heart surgery he had as a baby. After looking into the documents of his operations from years ago i discovered the truth behind his life. Is there anyone I can connect to for just general questions and concerns? My email is karimisa@mcmaster.ca, Thanks.