November 2023 Special Needs Living Magazine

2.2 FOR 22Q ADVOCATE. RAISE AWARENESS. MAKE A DIFFERENCE.

BY SUMMERLY ROWLANDS

Izzy Snow was born on July 1st, 2021, and at 22 days old, she was diagnosed with a rare genetic condition called 22q11.2 deletion syndrome. This disorder can affect every system in the human body due to missing one tiny piece of chromosome 22.

We welcome you to read up on the facts of this diagnosis along with Izzy’s personal journey thus far through our website www. my22qt.com, and we invite you to join our mailing list to receive quarterly newsletters full of updates & information.

Just as we weren’t familiar with the term 22q, we quickly learned that most others aren’t either. Answers to our questions seemed unknown and it came down to figuring things out through a lot of our own research - hence the creation of my22qt.

my22qt is a foundation we started in honor of our daughter, Izzy, with the mission to raise awareness, to educate others & help diagnosed families cope, and to pay it forward to the genetics division of Akron Children’s Hospital for expansion in research & services.

In addition to creating the my22qt website, designing awareness apparel for our online shop, and writing as a parent contributor for this wonderful magazine, I have also been able to educate at local vendor markets and I have had amazing opportunities to speak in classrooms, in hospitals, for special needs events, and I have been interviewed on various podcasts.

But the most recent accomplishment in raising awareness for my daughter and all other 22q warriors was hosting my first annual 2.2 for 22q awareness walk which took place on July 16, 2023.

The walk was held at the Jackson Township park where 138 of us walked 2.2 miles in unity, representing our “Her Fight is Our Fight” and “Team Izzy” awareness shirts and drawing attention from the softball tournament families and others around who stopped to ask us about the cause and made their way over to the pavilion to join us throughout the morning.

The event would not have been what it was without the incredible sponsorships from The 22q Family Foundation, Microplex, Inc., Rowlands Property Management, and local realtor Courtney Hatfield, plus The Kenney/Slaughter family who went above and beyond in providing the 2.2 for 22q t-shirts and Texas Roadhouse of Alliance who provided a delicious barbecue lunch for everyone. We also had 43 local businesses donate to the walk which enabled us to put together 21 fantastic raffle baskets (which everyone thoroughly enjoyed)

I really wasn’t sure how my first big event would go, but I was completely blown away. I am so grateful to each and every person that came to support and all of those who supported from afar. While we had our walk in Ohio, we also had loved ones sending photos from their 2.2 miles in other states and even another country!

As part of our mission is to pay it forward to the genetics division of Akron Children’s (as genetics is the least profitable aspect of any hospital, yet one of the most important aspects of our Izzy Snow), this event raised $3,863 – an overwhelming, incredible success!!!

I am 100% looking forward to next July for our 2nd annual 2.2 for 22q awareness walk, and I hope to see you there!