BUFFALO, N.Y. (WKBW) — It might be hard to tell from his big smile and joyful laugh but it has been a difficult road for two-year-old Augie Casas and his parents Casey and Chris.
The Buffalo family has leaned on their friends and faith as Augie has defied the odds after being diagnosed with Hypoplastic Left Heart Syndrome, a congenital heart defect that has left the two-year-old fighting for his life.
"Without palliative surgery, the average life span is six days," Casey Casas told me. "Augie had his first open heart surgery when he was six days old."
"In the beginning, it was so scary to see Augie come up from his first surgery with his chest open, you could see his heartbeat," said Chris Casas.
Unfortunately, that was only the start of the young boy's challenges.
Augie needed a second open heart surgery soon after and also required two brain surgeries after being diagnosed with Hydrocephalus but through it all he keeps defying the odds.
"We've lived the last two years in this really surreal space of the in-between stages of life and death, and this window being in front of us where you can see both sides," said Casey.
And now the latest challenge, Augie needs a heart transplant after being diagnosed with active heart failure.
The Casas family has already started the process of Heart Transplant Evaluations at Boston Children's Hospital.
Family and friends are rallying support by selling "Strong Like Augie" tee shirts to raise awareness for organ donation and to help cover the costs of his transplant journey. You can find more information about the shirts here.
"We've always called Augie our little Augie Bear, and it's kind of a testament to him," said Casey. "He's been a bear through all of this, just shredding through the odds. We want people to realize how strong he is, and how strong all these cardiac kids are."
Friends have also started a GoFundMe page to help support the Casas Family.
Casey said the process of finding a heart, the transplant, and then the recovery can take close to two years to complete. Augie will need to live in the Boston area throughout.
"He will need to be listed 1-A which is the most critical. It will require him to live inside the hospital. He will be on heart failure medication and then will be listed for his hero heart," Casey said. "So I will actually stay in the hospital with Augie the whole time, and Chris and I will rotate who is there, whose home, and who's running the 'Cheeseburger Factory.'"
That cheeseburger factory is Mister Sizzle's on Connecticut Street in Buffalo which Casey and Chris co-founded.
"I feel incredibly blessed that we are able to go down this road for a transplant because that means he gets a second chance," said Casey.
"Every day we are a family of five is the best day of my life no matter what's going on," added Chris.
