Welcome to #My22q website. My online home for sharing a little bit about my life and how 22q impacts it. We thought the best way for you to learn more about it, was to share my story. I was 15 months old when my Mom and Dad learned that I was born with 22q. Surprise is an understatement, more like overwhelming; and for those first 15 months of my life, we didn't even know that I had a medical condition, or even a genetics disorder. We would then learn that 22q is very common, and 2nd most common behind down syndrome;
yet so many people have never heard of it.
My Current Medical Conditions
22q Chromosome Deletion Syndrome
Profound Bi-Lateral Hearing Loss
Annual Virtual Walk/Run with The 22q Family Foundation
Annual Walk with Jayce
We wanted to share a little bit about Jayce and his genetic disorder, so why not invite some of our closest friends and family to join us for an intimate walk through a nice park.
We can share in friendship and in learning more about 22q and how it can disrupt Jayce's life and many others who are living and thriving with 22q.
22q is the second most common genetic disorder after down syndrome, yet it's less known and harder to diagnose. 22q has a rate of occurrence in 1 in 2,000 births and is found in 1 of 68 children with a heart defect.
WHAT IS 22Q11.2 DELETION?
HOW COMMON IS THE 22Q11.2 DELETION?
IS 22Q11.2 DELETION THE SAME AS DIGEORGE SYNDROME?
WHAT TESTS ARE USED TO IDENTIFY THE DELETION?
IS THE 22Q11.2 DELETION HEREDITARY?
WHAT ARE THE SYMPTOMS OF 22Q?
WHAT ARE THE MEDICAL NEEDS IF DIAGNOSED WITH 22Q?
HOW SHOULD INDIVIDUALS WITH 22Q11.2 DELETION BE FOLLOWED MEDICALLY?
HOW DO FAMILIES COPE?
75% of all individuals with 22q have a heart defect
75% have differences in their palate that affect their
speech and often create nasal regulation.
35% have significant feeding and swallowing problems,
77% have immunodeficiency
The 22q Camp / Family Retreat retreat brings families and professionals together in a fun and nurturing environment to learn more about the disorders and treatments. As of now, this is the only 22q family event of its kind in the United States. Families support one another as we navigate life with these complicated genetic conditions. The weekend includes informative sessions plus opportunities to connect with and share information and experiences with others.
If you felt like helping or have talked with my parents, you might know we have a special account that you can gift $$$ to. These accounts are for short term or long term planning, such as medical expenses, medical equipment, and even for my future. Please click the donate button below and connect with my parents, let them know who you are and they will share with you how to share your gift for me.
We Wear Red
In honor of 22q, We Wear Red.
From time-to-time My22qFamily.org will help us in updating our 22q Support Shirts. Our shirts are designed with MY FAMILY in mind, along with this very specific website that you are visiting. This allows others to learn more about me and how 22q affects our family. This website is free to our family and My22qFamily.org is not asking us to pay to support our site. So we ask that if you wish to support our family and to help My22qFamily.org help as many other 22q Families, please consider buying a 22q shirt. When you purchase a 22q shirt from my site, the shirt represents me, my family, and my (this) website.