Phoenix Children's Hospital helps San Tan Valley parents cope with newborn's rare disorder

SAN TAN VALLEY, AZ - Almost everything about little Emma Tafoya says toddler on the run -- she talks a lot, and moves so much that it's tough for her parents Devon and Jacque to keep up.

Emma is a special little girl with some special challenges. She was born with so many physical problems that it's hard to believe she's making so much progress.

This 16-month-old suffers from Cloacal Exstrophy, which means she was born with organs that were literally split in half.  She had a tethered spinal cord, a club foot, and not enough intestines to assist digestion.

Emma is essentially tethered to a backpack 20 hours a day to make sure that she gets enough nutrients. She cannot eat like a normal toddler. Some of the rooms in the Tafoya's home look like a mini pharmacy due to the extensive medication needs. 

Emma's body will battle serious issues for the rest of her life, but the family is making it work.

Phoenix Children's Hospital has been like a second home to the Tafoya family.

"They never told us 'never' with anything. All her doctors have been very good at keeping our hopes up with everything. They've given us best case scenarios and worst case scenarios," Jacque said.

As if the anxiety that comes from being first-time parents wasn't enough, the Tafoyas had to receive a crash course in medical training at Phoenix Children's Hospital just to help their newborn survive.

Emma's father Devon is extremely grateful for the care that PCH gave their family.

"All I can say is they're a Godsend, I mean they've helped us through everything. We got there and from the get go they've helped us out."

Help provide healing and hope for the kids at Phoenix Children's Hospital! Make a donation online or call in to our ABC15 Telethon TODAY!

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