PHOENIX — Most parents have no idea what they would do if a child was diagnosed with a rare illness. But PANDA, People Acting Now Discover Answers, is a group loaded with active Arizona moms is doing all it can to improve treatments and cures for devastating childhood diseases.
PANDA has been doing this since 1999 thanks to a strong and unique partnership with researchers and physicians at the Steele Children's Research Center in Tucson.
Their efforts drastically helped 6-year-old Peyton Augustin who is a happy and active kindergarten student in the Valley.
Peyton was born 10 weeks early with a hole in her heart and no T-10 vertebrae.
"It was an emergency C-section. They told me that she had anal atresia, which was a surprise. We did not see that on any ultrasound and that basically means she wasn't born with any anal opening," said Peyton's mom Katherine in an interview with ABC15.
Unsure if this was Peyton's only diagnosis, doctors immediately admitted her to the NICU. After roughly 9 weeks of testing her mom says Peyton was diagnosed with an extremely rare condition called VACTERL syndrome.
"VACTERL syndrome stands for the various defects that can happen. Most of the things that she had were expected to resolve on their own. She did have to have surgery to repair the anal atresia and then she had feeding issues when she came home," said Augustin.
Peyton wasn't eating. Then, a chance meeting between moms at Phoenix Children's Hospital led her family to a new beginning.
"She told me about Dr. Ghishan and the Steele Research Center," Augustin explained.
Dr. Fayez Ghishan is the lead researcher at Steele Children's Research Center (SCRC) in Tucson. SCRC is the University of Arizona's Department of Pediatrics research division.
These physicians are devoted to improving the health of children, including the areas of cancer and blood diseases, GI disorders, autism and autoimmune disorders.
Katherine also learned more about PANDA, which is a Phoenix-based board raising awareness and research money for childhood diseases through the Steele Children's Research Center.
"It was the first time we went to a specialist who was evaluating everything Peyton had versus just that one single thing, which is obviously her feeding issues. The doctor was able to look at everything going on and then recommended some medications and it was truly like a Godsend. It was a blessing!" said Augustin.
Peyton went through several tests revealing the narrowing of her esophagus. A swallow study, would also reveal she had difficulty swallowing and breathing any time she would eat.
Dr. Ghishan prescribed two medications and two weeks later she was eating on her own.
"It was crazy. She started sitting up. She started rolling over, just started walking. All later than planned, but it all kind of came together after that," said Augustin.
Breathing a sigh of relief now, Katherine hopes by sharing something so private and painful for their family, it may offer ways for others to find help and hope!
"You're always reading the scariest stories, which is not fun. We didn't share our story for a long time, but I wish I had more stories to read when I was going through this. It would have helped," Augustin added.
Peyton's mom also tells ABC15 that she continues to make more progress than doctors ever expected she could.
To learn more about PANDA and the Steel Children's Research Center, click here.
You can also support the organization at their annual fashion show and luncheon on May 11 at the Arizona Biltmore.