Allie - Our Inspiration
Our beautiful daughter Allie, our miracle child, was born in February of 2015. We didn't know it at the time, but our family was about to embark on an incredible journey that would teach us how precious and fragile life is.
A few weeks after she was born the doctors noticed that Allie was jaundiced, however they explained that it was very common in newborns and that it would eventually go away on it's own. We didn't think much of it at the time because the doctors said it wasn't anything to worry about. They didn't give us a specific time frame for normal baby jaundice to disappear, and aside from the yellow skin tone she seemed like a normal healthy baby. At her two month checkup, our pediatrician took one look at her and became very concerned that her jaundice had not subsided. After a handful of tests over the next couple days our worst fears were confirmed, Allie was born with a life threatening liver disease called biliary atresia. Babies born with biliary atresia have bile ducts that are blocked or not formed at all. These ducts are critical for survival because they transport bile from the liver into the digestive system to break down food. Without functioning ducts, bile becomes trapped in the liver and eats away at it very quickly. There is no cure for this disease. Most kids born with this disease do not make it to their first birthday without major medical intervention. Upon learning about this horrible disease that our sweet innocent baby was born with, we were obviously crushed. No one can prepare you for that kind of news.
Allie was immediately rushed to the hospital for an emergency surgery called the Kasai procedure. The doctors opened her up and took a piece of her intestine and attached one end to her liver where the bile ducts would normally be, and the other end was attached back to her digestive system in an effort to allow some bile drainage from the liver. This procedure buys time for some children, in some cases delaying the need for a liver transplant until later in life. But unfortunately the Kasai didn't improve Allie's condition. Her skin and eyes were becoming more yellow, her belly was filling with fluid, and her body was losing muscle mass. A few weeks after surgery the doctors informed us that a liver transplant was the only chance Allie had to survive, and without it she would only live a few more months. We were terrified and devastated that her situation had become so bleak in a matter of days.
Allie immediately went on the liver transplant waiting list. Waiting for a liver from a deceased donor can be months and often years. Time is the enemy without a functioning liver so the doctors wanted to explore the possibility of using a living donor to give Allie her life saving gift. By doing so it would greatly speed up the process and reduce the chances of Allie becoming too sick for the grueling liver transplant surgery. We jumped at this opportunity. As Allie's father I would've given my own life to save hers in a heartbeat, so the decision to be a live donor was an easy one. I immediately went in for medical tests to determine if I was healthy enough to donate a portion of my liver to her. After a few weeks of medical tests and meeting with hospital counselors they gave me the green light to be Allie's living donor. It was the happiest moment of my life. It really felt like I was put here on this earth to be there for her when she needed me most.
On July 30th, 2015 the doctors at Keck USC Medical Center removed a portion of my liver. Immediately after surgery that piece of liver was placed in a cooler and driven across town to Children's Hospital Los Angeles where they would perform the transplant. Talk about precious cargo! After a long day of two back to back surgeries they successfully implanted my liver into Allie. It's amazing how quickly her body responded positively to having a newly functioning liver. Within a day her skin and eyes were returning to normal. Her huge swollen belly was decreasing. We were finally at a point where Allie's future was looking bright! Two years later Allie is now a happy, intelligent, rambunctious, and HEALTHY little girl. There have been some road bumps along the way. Life after transplant is not easy. Transplant patients take medication every day to prevent their body from rejecting the new organ, and one of the side effects of that medication is a dangerously low immune system. Hospital stays, doctors visits, medication adjustments, and blood draws seem to be never-ending. It's a reality that you have to accept and adapt to. As parents, we would do anything for our child, so we've learned to take these challenges in stride.
As we went through the diagnosis and transplant process, one of the questions in the back of our mind was "how are we going to pay for this?". Of course our daughters health was first and foremost, but being the planners that we are, we couldn't shake the stress related to the financial implications of all of this. Could we keep up with the never-ending copay bills? Could we afford the expensive medication for life? Could both of us hold steady jobs if one of our children was constantly in the hospital? What would happen to Allie if she somehow lost her insurance coverage? My "plan" was to charge our credit cards for anything we couldn't afford and worry about it later. Some friends and family suggested we start a 'Go Fund Me' to help us out during this difficult time. I immediately shot down this idea and stubbornly wanted to bear the financial weight of the situation ourselves. I didn't know it at the time but support from family, friends, and the community is essential to making it through a serious medical issue. After some convincing we reluctantly created a 'Go Fund Me' to help us cover Allie's medical expenses. After one day, we raised a pretty significant amount from our friends and family. We were so thankful that so many people we knew immediately stepped in to help. On day two, on a whim, I decided to let one of my favorite musicians know about Allie's campaign via Instagram. Without hesitation, Steve Angello made a large donation to Allie's cause. We were in shock and absolutely elated that he gave such a generous gift to aid in her recovery. But it didn't end there, his fans from around the world became aware of Allie's story and donations poured in. We couldn't believe how many kind and caring people, whom we had never met, chose to lend their support to us. That campaign was an incredible blessing that we will always be thankful for. Allie's medical bills and medication, along with other expenses like fuel and food during hospital stays, have all been covered by Allie's amazing supporters.
Now it's our turn to pay it forward. By connecting with other parents going through the same journey, we have learned that there are so many amazing liver babies out there in need of our support. Our goal for this organization is to aid in the recovery of as many pediatric liver transplant patients as possible. Behind The Liver Baby Foundation is simply a Mom and Dad who feel so incredibly fortunate to be here with our daughter. We will do our best to honor the fighting spirit of all the liver babies around the world, including those who are no longer with us. We hope that Allie's story gives hope and inspiration to anyone affected by biliary atresia.
