ORANGE, Calif. – All dressed in red, children living with DiGeorge Syndrome and their closest supporters, took over a portion of Irvine Regional Park and Orange County Zoo on Sunday, May 19. 

The families are part of network organized by a nonprofit based in Fontana called 22qties Unite. The number 22 comes from the definition of DiGeorge Syndrome, which is caused by a deletion or duplication of the 22nd chromosome.

This chromosomal defect is present from birth and is generally found in every body cell. It affects almost every system of the body, causing a wide range of symptoms. It affects one out of every 2000-4000 births and is the second most common chromosomal disorder next to Down’s Syndrome. 

The syndrome can run in the family, but in some cases doesn’t run in the family. It’s caused by a spontaneous, or de novo, genetic alteration. To determine the syndrome, doctors need to conduct genetic testing. 

For many families with children living with DiGeorge Syndrome, they look forward to meeting up with their fellow 22qties at meetups that are held several times a year. It’s a chance for families to connect and reconnect over their personal stories with DiGeorge. 

Jaclyn Allen-Hassold and her husband, Paul Hassold, welcomed their second child, a boy named Nathan, almost six years ago now. 

“We were super excited. Our daughter was going to have a sibling. When he was born and they put him up on my chest and I took a good look, his ears were a little boxy and from what little I did know, boxy ears could mean something. So 24 hours after birth we did find out he had a birth defect and that started our journey,” said Jaclyn Allen-Hassold.

The journey was going to change the Hassold household. The family went in and out of doctor visits, therapy sessions at a facility and in their home. For most of their son’s early years, he had to follow a strict medication regimen. 

“At about five weeks and several trips to the pediatrician, we just couldn’t figure out why he wasn’t gaining weight and eating enough. We knew about the heart condition, but he just slept 24 hours a day. They finally admitted him to failure to thrive,” said Allen-Hassold.

Then, doctors hit Nathan’s parents with bad news.

“The doctor was like, 'we’re going to go ahead and send out for genetic testing, but you might want to go ahead and start planning his funeral.' Wow. You felt like you were just horse-kicked in the jaw,” said Allen-Hassold.

The couple decided they weren’t going to do that. Instead, they figured out how to take care of Nathan through trial and error, and refused to give up. Since then, Nathan has turned five and is thriving at school. He’s no longer in special education classes and is learning how to eat solid food on his own. 

Allen-Hassold was able to find a community of parents who have children with DiGeorge. She was able to learn from other parents and help some in return. She is now a board member for 22qties Unite which is led by Nancy Lugo, who also has a son living with DiGeorge. He was diagnosed when he was two-years-old. 

“I reached out to support groups online and that kind of saved me and gave me hope, but there wasn’t anything local. I met with a bunch of moms and we started to meet up and thought, 'why don’t we start this for other families because they’re probably going through the same thing we’re going through,' which is nowhere to turn,” said Lugo.

The nonprofit offers families education resources and emotional support. Since it’s creation, the nonprofit has grown. The meetup on Sunday attracted about 400 people who were all connected by a child in their lives who is living with the syndrome. 22qties Unite hosts five events every year. 

Anyone who is interested in learning more about the syndrome and the nonprofit can visit: 22qties.org