Benefit planned for Aria Rose Gregory
Aria Rose
COSHOCTON – A benefit dinner and auction for Aria Rose will be held Friday, Jan. 29 at The Moose Family Center. Serving begins at 5:30 p.m. The auction will follow and music will be provided.
Aria is the daughter of Dustin and Tiffany Gregory, the granddaughter of Brian and Amy Reiss and niece of Brianne and Molly Reiss. She was born with a rare genetic condition called Tuberous Sclerosis Complex which causes benign tumors to grow throughout her body. Aria has multiple tumors in her brain, causing her to have severe seizures.
Tiffany will never forget the day their daughter was born.
“It was one of the happiest and scariest days of our lives,” she said. “I went to my OB for a routine check-up that quickly turned into an emergency c-section. They couldn’t trace her heartbeat. Aria had an arrhythmia and a murmur in her heart and ended up bouncing into the world three weeks early. We were overjoyed to meet our beautiful girl and amazed at how much she looked just like her big brother. Little did we know, our whole world was about to turn upside down.”
Aria’s seizures began at 6 weeks old and in the last 24 months she has failed more than 16 seizure medications and treatments.
“Her seizures continue to worsen and each time a new ‘type’ of seizure develops, it is more devastating than the last,” Tiffany said. “She has been in physical and occupational therapy with Help Me Grow since she was 6 weeks old, learning and relearning how to utilize the skills the seizures steal from her. She learned how to roll over four times, how to sit up twice, it took months for her to learn to crawl correctly and, at 24 months, walking is still a work in progress. No matter the obstacles Aria has faced, she has always met them with a smile. She is the sweetest, happiest baby and brings so much joy into our lives. She can’t talk yet, but by her smiles and giggles, we know she knows that we adore her and we know she loves us with all her heart.”
The family almost lost Aria five months ago when her brain started convulsing with generalized (or tonic clonic) seizures.
“Her diaphragm seized up during these seizures not allowing her to breathe; she turned purple and then blue,” Tiffany said. “It took multiple rounds of rescue medication to stop her seizing. She was life-flighted to Cincinnati Children’s Hospital where she could be treated by her neurology team. She was in stable condition when we left, so I told Dustin to stay home with our son (who was undergoing breathing treatments for his asthma) and I would go with Aria. We would be in constant contact, but both of our children needed their parents, so we had to split up. I will never forget the night of Sept. 1, 2015 as long as I live. Around 3 p.m., we arrived at Cincinnati Children’s Hospital PEMU and were hooked up to a Video EEG to monitor Aria’s brain waves. At 5 p.m., the seizures started and they wouldn’t stop. Numerous rescue meds were given; she just kept seizing and her stats were dropping fast. The nurse turned to me with a look of panic in her eyes and said, ‘Tiffany, you need to call your husband and tell him to get here…just in case he wants to say goodbye.’ Those words still haunt my dreams. Thank God above, they were able to stop the seizures that night. They put her on a new med that finally seems to help keep that particularly evil seizure at bay. But we have lived every day since then, holding our breath, waiting.”
After that the family started exploring the option of brain surgery for Aria. No surgeon would touch her case until it reached Dr. Devinsky and Dr. Weiner at the NYU Epilepsy Center.
“It took months to gather all of the information they needed from various sources and every new seizure required more information for them to review, but finally we heard the words we have been longing to hear, ‘We think we can help her.’”
Aria and her parents will be in New York for an extended period of time as she undergoes several brain surgeries throughout the course of the next year. All proceeds from the Jan. 29 dinner and auction will benefit Aria on her journey.
To donate items to the auction contact Amy at 740-502-4715 or Molly at 740-291-2466. Monetary donation also can be sent to: Aria Gregory Benefit Fund, c/o Baltic State Bank, 101 E. Main St., Baltic, OH 43804. A wide variety of items already are lined up for people to bid on at the auction including: Overnight hotel stays, Columbus Blue Jacket tickets, a craft brewery tour, show tickets, a stone fire pit, Ohio State Buckeyes black out jerseys, a photography session, a drone, and much more.
For more information, visit Aria Rose Benefit Dinner and Auction on Facebook.
Category: People & Places
