June 2023 Special Needs Living Akron/Canton

Allow us to formally introduce you to Miss Izzy Snow!

BY MELISSA KLATT PHOTOS BY MICHELLE HERDLICK

If you’ve ever wanted to witness a rare occurrence, you will find that in Miss Izzy Snow, an almost twoyear-old girl from Jackson Township born with a unique disorder. She was born in July 2021 to her parents, Summerly and Sterling, and she’s got quite the story and a loving family to help support her through the winding roads they’ve navigated so far.

SIXTH SENSE KICKS IN AT THE HOSPITAL

After the birth of their daughter, Summerly immediately felt something was off and asked the nurse why Izzy was trembling so much, to which she answered that it was her immature nervous system figuring itself out. That seemed to make sense, so they were discharged and sent home.

In the days following discharge, Summerly and Sterling noticed the trembling was getting worse – to the point where it became full-on seizures. Izzy was immediately admitted to the Akron Children’s Neurology unit for eighteen days where lots of testing was done.

“She was a big question mark for a while,” reflects mom, Summerly. “No one was certain what was going on. It wasn’t just seizures anymore; It was low calcium, low parathyroid hormone, high phosphorus, T-cell deficiency, a cardiac anomaly, feeding intolerance, reflux, and breathing difficulties, ultimately leading to a Code Blue at one point: the scariest moment of our lives.”

Nothing was adding up until they brought in a geneticist…then, it finally clicked after receiving the results of the chromosomal microarray blood test. Izzy was finally able to leave the hospital with a diagnosis: 22q11.2 deletion syndrome, a rare genetic disorder caused by a tiny missing piece of chromosome 22. This very small defect can affect every system in the human body!

ALMOST TWO YEARS OLD WITH THE ULTIMATE DREAM TEAM

At this point in time, Izzy has a caring team of ten specialists, though the number ebbs and flows. They all adore her and do their best to care for her as she has severe doctor & hospital anxiety, likely from the ongoing blood draws.

“It’s very hard to soothe Izzy at appointments, but thankfully we have a wonderful care team who loves and understands her so they try their best to get her in and out as quick as

In September of 2021, Izzy’s dad and I were driving to one of her outpatient appointments and through casual conversation, we just flat out said, “This sucks.” With that, we decided we didn’t want people to have to go through what we did or have to feel the way we do. We know we can’t change anyone’s pain or stop it, but we wanted to help. In that moment, we decided to start a blog. That blog quickly evolved into a website and now it’s our very own foundation - my22qt.” possible,” says Summerly with grattitude.

Izzy’s got more than a wonderful medical team: she’s got a family that loves her so much, they started a foundation in her honor! Parents, Summerly and Sterling (with support from older brothers, Kam and Eli), started my22qt to help other parents navigate the waters of their child’s diagnosis so they could be more educated and prepared.

In September of 2021, Izzy’s dad and I were driving to one of her outpatient appointments and through casual conversation, we just flat out said, “This sucks.” With that, we decided we didn’t want people to have to go through what we did or have to feel the way we do. We know we can’t change anyone’s pain or stop it, but we wanted to help. In that moment, we decided to start a blog. That blog quickly evolved into a website and now it’s our very own foundation - my22qt.” Summerly Rowlands

JULY STARTS AN EXCITING NEW CHAPTER FOR MY22QT

Izzy’s birthday month is being celebrated in a big way – for her and others

“Our mission from the beginning has always been to educate and raise awareness, help families cope and find understanding, and pay it forward to the genetics division of Akron Children’s Hospital because without them, who knows where we’d be today. In that spirit, we will be hosting our first annual 2.2 for 22q Awareness Walk this July! Her Fight is Our Fightwe invite you ALL to join us!” Visit online to sign up here: https://runsignup. com/Race/OH/Massillon/