Adaline's BIG Heart Repair

Hi everyone!

Our names are Elgin and Shamber Alway. We are the parents of the sweet 9 month old, Adaline Jubilee.

If you are new here...

Adaline has a very RARE heart defect called Tetralogy of Fallot with Pulmonary Atresia and MAPCA's (Major Aortalpulmonary Collateral Arteries). Her heart condition is so rare, that only 85 kids are born with it per year.

Tetralogy of Fallot, is a heart defect that robs the blood of oxygen to the rest of the body. Often called, "Blue Baby Syndrome". Children with TOF cannot survive without surgery. In Adaline's case, her pulmonary artery never fully developed.

She received a BTT Shunt when she was just three weeks old. This was a temporary fix to allow her to grow bigger and stronger so she can receive a full heart repair. We are FINALLY to that point.

Because Adaline also has MAPCA's on top of her TOF, she is being sent to world-renowned surgeon Dr. Frank Hanley at Stanford Children's Hospital. He is THE creator of her MAPCA's surgery.

We originally had our BTT Shunt placed by Dr. Michael Ciccolo at Sunrise Children's Hospital in Las Vegas. Most of you know that Elgin and I spent 4 months there. 3 of those Adaline spent in the hospital. It was the most trying time in our lives, but we respect our team down there and their decisions. They have decided that because Adaline has 3 MAPCA's, she will receive the very best care in Stanford.

We had a Cath Procedure done in Vegas just on November 8th. That let our team and our cardiologist know that instead of the 1 MAPCA they saw originally, Adaline actually has 3 of them. Our paperwork has been sent over to Stanford to get us scheduled for her repair sometime in January 2023. That is quickly approaching.

We have been told that the Ronald McDonald House in Stanford is incredibly hard to get into. We are unsure of our housing situation when we get over to Stanford. It's not going to be like Las Vegas.

Adaline's full heart repair is the first of MANY. They will use a cadaver and make a pulmonary artery for her. And they will go in and close her MAPCA's. This surgery is going to take anywhere from 8-17 hours. With a recovery up to a month in the hospital. So... here we go again.

It's incredibly scary going into the unknown. We are asking for financial support again. The first surgery and 76 days totaled out to $2.6million dollars. And while we are thankful to have insurance, much of that still wasn't covered and the medical bills are pouring in.

Stanford is an out of network hospital. So we aren't sure much is going to be covered at all.

We need financial help. We are drowning in medical debt, and the only way to save our babies life is with this surgery.

Adaline has brought so much joy into our lives. While to you, she may look like a completely normal and healthy baby, she is still sick and needs this surgery to survive.

We love you all so much and appreciate the love and support you have shown our family.

Thank you for your donations and prayers.

The Alway Family.