NASHVILLE (WKRN/CNN) – Before turning 2 years old, Adalynn "Addy" Rogers had two open heart surgeries, but as her condition has recently declined, her parents are trying to get the word out for help.
It’s been a roller coaster of emotions for parents Justin and Kristi Rogers – from the time their daughter was born until now, as she waits for a new heart at Vanderbilt Children’s Hospital.
The little girl, who turns 2 on Jan. 11, is one of about 40,000 babies born with congenital heart disease or CHD each year in the US.
"It's probably the worst thing that anybody could ever go through,” Justin Rogers said. "Never really ever been anything normal about her life."
At 2 days old and again at 5 months, Addy underwent open heart surgery.
For nearly a year and a half afterward, the little girl was home with her family – until late October when her heart began to decline.
"To me the hardest part was four weeks ago, she was playing like any other kid,” Justin Rogers said. “[Today] she can barely lift her hand up to squeeze your thumb."
A virus made Addy’s condition even worse, and she is now on a ventricular assist device or VAD, a mechanical pump that acts as her heart.
"There's nobody tougher in my eyes than that little girl,” Justin Rogers said.
The family has shared their experience on social media, hoping to draw awareness to the need for organ donors and drawing prayers from around the world rooting for Addy.
"You get messages saying this little girl – you know, they weren't very strong in their faith – and then, they're reading all the stuff about her and what she's going through and they're getting back right with God. I mean, my little girl did that. That's a big deal,” Kristi Rogers said.
The family says they don’t know how long Addy will be waiting for a heart, but the average wait is six to eight weeks.
A GoFundMe campaign has been set up to help the family, which also includes Addy’s 5-and 7-year-old brothers. A fourth child is expected by the end of January.
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