Two years ago, Gavin Maxwell’s future was uncertain. 11-year-old Gavin, who had been diagnosed with Alpha One Antitrypsin deficiency when he was one year old, was facing a life-and-death struggle with liver disease.
“I got pneumonia and that kind of kicked it all off,” Gavin recalls. “That was the start. That was the match to the fire.”
Gavin’s dad Willy points out that Gavin’s diagnosis came with the knowledge that the only cure for Alpha-1 is a liver transplant. “So we knew someday he would need a liver transplant, and it was all based on how he progressed. We managed his illness with medication and diet. We did labs every three months just to manage his symptoms.”
The Maxwell family didn’t know anything about the genetic disorder until Gavin’s diagnosis. It turned out that Willy and Gavin’s mother, Shay Maxwell, are both carriers. Willy explains that his wife actually has the same disorder as Gavin. “In children it manifests as liver disease. If you make it through adolescence without any complications then as an adult it manifests as lung disease.”
The Maxwell’s have learned a lot about the disorder over the years. “Basically Alpha-1 Antitrypsin is a protein that your liver produces to protect your lungs,” Willy says. “So when you get a cough or pneumonia or something, the liver produces Alpha-1 and it goes to your lungs and protects your lungs. In his case, the alpha-1 is malformed in the liver, so it never leaves the liver. So it just builds up in the liver and ends up attacking healthy liver tissue, which is what caused his cirrhosis. The doctors actually projected his adolescent growth spurt or a disease or a sickness like pneumonia would start the problem because the liver would just get overtaxed. It actually was a combination. He was ten, so he was hitting the adolescent growth-spurt and got sick, which just overtaxed his liver and it began to shut down.”
Gavin couldn’t go outside and play like most kids his age. He was reliant upon an oxygen tank to function, had very little energy, and his skin was a bluish green most of the time.
“Once I started to get sick I thought that my sickness would just go away maybe and just be like any other flu,” Gavin remembers. “But it didn’t go away, it just got worse and I had to get on oxygen. So I felt something was going to happen. And then once we went to the hospital, I knew that something wasn’t right.”
Four months before his transplant his lungs were impacted. He was on oxygen the whole time, and he missed a lot of school that year. In February, they life-flighted him to Saint Louis and that’s when he officially got put on the transplant list.
“When he got diagnosed, we visited a number of transplant centers and we ended up choosing the Saint Louis Children’s Hospital for a lot of reasons,” Willy says. “One, it does a lot of pediatric liver transplants. And they have a really low wait time, for an organ. And you get that feeling, like, this is where we need to be, these are the doctors we need to be with.”
“The doctors and I all know each other by name,” Gavin adds. “Whenever I walk in they say, ‘Oh, hey Gavin.’”
Gavin went under surgery on March 2nd, 2015. Within hours his new liver began functioning, his skin turned a healthy pink, and his blood levels became normal. Gavin no longer needs to use an oxygen machine and can now engage in sports and play like other boys his age.
Gavin enjoys watching and refereeing football, and playing basketball and baseball. He has joined the Civil Air Guard and intends to become a pilot in order to assist in searches for lost or missing hikers. He also works out at the gym with his parents. If anything, Gavin now has a more active life than most kids his age.
82801 caught up with Gavin and his dad to find out what life has been like since the transplant.
Gavin: I get to play a lot of sports, the one sport I still don’t get to play is football. And that kinda hurts because that was my favorite sport growing up. I just enjoy the game. I just felt like I was doing something good. I felt active and I just felt good when I was playing football. But since they wouldn’t let me play football, it kinda hurts.
Willy: One of the cool things that came out of this was he played little guy football, you know, flag football, here in town and when his friends go the full pads he couldn’t. So the rec. District allowed him to referee football. He’s actually refed for three years now. He’s a certified ref. He refs Junior High games and Little Guy games. So he does a lot of refereeing, which is really cool. It keeps him connected to the sport. The Sheridan district has been fantastic to allow him to do that. It was just kinda for fun at first, and then he enjoyed it. So he took the test and he learned the rules.
Gavin: And now I get paid.
Willy: And now he gets paid to do it. He gets to throw flags on his friends.
As a parent I think the best thing you can see in a child is a future. Pre-transplant, the future was the transplant. So you were managing health issues and the future is, “okay, we’re building up to that transplant.” So, now that we’re post-transplant and he’s doing so well. We can envision a future, and what he wants to do with his life, and what he wants to be when he grows up. As the parent of a sick child, you try not to think of that because it’s hard. And now that we’re past that hump we can say, “Now we can move forward.” You literally cured the disease. He is no longer Alpha-1 Antitrypsin deficient. To me that’s the best part. Knowing that he has a future and he’s growing. Physically, he’s developing like he should be and just being normal… as normal as a thirteen-year-old boy can be.
82801: What would you tell a friend if they had something like this happen?
Gavin: I would just tell them to enjoy their time, because there’s no guarantee of what’s going to come out in the end. So enjoy what you’re doing right now and just have fun. And once that time comes where you need a transplant, believe that you can do it and someone’s looking out for you. Because you can get through it.
Willy: As a parent, the shock of the initial diagnosis is hard, but it just becomes your new normal. People would always say, “I don’t know how you guys deal with it.” Well, number one, I don’t have a choice. The reality is, it’s not the path we planned but it’s our path. So it just is what it is and you take it day by day. And I agree with Gavin. We live every day to its fullest and don’t take it for granted. You’re going to get bumps and bruises along the way, but you’re just going to go through it. I think for us it’s about choosing your attitude and your response. I’ve always been amazed with how Gavin’s handled it. The night before the transplant, you know, we’d gotten the call. They called us to the hospital and the transplant was set for the next morning. As a parent, you’re pretty nerve-wracked. And he was joking and laughing. Immediately following the transplant he got wheeled into recovery and my wife and I came and he woke up enough to say, A: “Do I have a new liver?” And B: “Dad, you can sleep on the floor.” That’s all he asked. So he’s always had a good attitude about it and I think that’s carried him through a lot of the rough times.
For his sisters growing up, it was hard. Cause you couldn’t plan on things. For family vacation, you couldn’t go too far away from the doctor. So it impacted all the family. Our lives revolved around his illness. So, if he was sick we couldn’t go places. So we missed events. It impacts the whole family in that way, so it becomes everybody’s disease. I think for Gavin, the silver lining is that he’s had opportunities to advocate for organ donation. He was recently asked to be on a panel for the National Transplant Patient Summit in Washington, D.C. He was able to speak on a panel with other adolescents that had transplants and talk about how it impacted them. So his ability now to be an advocate is really cool and he’s doing well with it.
82801: How important is advocacy to your future?
Gavin: I don’t think that’ll be my full career. But I think that I’d love to be a part of a life parade and go to speaking events about organ transplants and how it saved me. I think that will be a part of my life, but I just don’t think it’ll be my full career. I want to go into law enforcement. When I was young, I liked the show Cops. That’s what got me started.
82801: So it’s just as simple as making a choice on your driver’s license to be a donor, right?
Gavin: They’ll ask you, “Do you want to be an organ donor if you die in a crash?” The second that heart goes on your license you’re an organ donor. That’s all you’ve got to do.
Willy: It’s pretty simple. How many lives can you save, Gavin?
Gavin: Eight lives.
Willy: So as an organ donor, you can do so much. Gavin got the liver, but Emma (Gavin’s donor), as far as we know…
Gavin: Her heart went to a woman.
Willy: Her heart, kidney, I think her corneas were transplanted. I mean, it was an amazing impact that one young lady had.
82801: Is the campaign about awareness? Do people have good reasons not to transplant, or are they just not aware of how important it is?
Gavin: It’s important, but you shouldn’t be hard on yourself just because you’re not an organ donor. It’s however you feel. You don’t have to do it, but if you do it you could save eight lives. As sad as it is, one death could save eight lives. It’s that simple. Be aware of it, because we could save millions and millions of Americans today because of organ donation and the lack of people who are signing up. It’s sad.
Willy: Last I knew, there’s a little over 200,000 people in the United States waiting for organs. So people literally die every day on the waiting list. Gavin was blessed when he got put on the transplant list. He automatically went to the top because of the severity of the situation. He was on the transplant list for only 18 days. There are people who have been on the transplant list for years. To me, maybe when I was young I didn’t comprehend it. But to realize now that in my death, that I don’t need my organs anymore. So why wouldn’t I help save someone’s life? Obviously in our situation it makes it real easy to say, “Yeah, it’s important.” I think people hesitate maybe, because they’re not either of how to do it or because they don’t understand the process. I just don’t see where you would have any reason why you wouldn’t do it, why you wouldn’t sign up to help save someone else’s life. It’s a major blessing.
82801: Did Gavin grow up in Sheridan?
Willy: One of the beautiful parts of this whole story is that we’ve only been here a couple of years, and the way the community rallied around Gavin and supported us, through prayer and financial donations, and just moral support, and all those things. It was just incredible. People would send pictures where they would have “Gavin Strong” up on billboards around town. The police station had it up. It was just amazing. I would almost say that as a parent you feel guilty. Did I say thank you enough to the right people? Or to all the people? And I don’t think you can ever say thank you enough for doing what this community did for us as a family. Because we didn’t have roots here. We weren’t established here, so this is just an amazing town. We had people helping organize fundraisers that had seen his story and just felt compelled to help. They had no prior relationship with us as a family, or with Gavin.
We had to fly down for the transplant, and a local entity who had a private plane donated the plane. Another group purchased the fuel and then the pilot donated his time to fly us down to Saint Louis on the private plane. You tell people around the country and they’re just flabbergasted that a town would do that. So we feel very blessed. I think God led us to Sheridan for that reason a couple of years before the transplant.
82801: What’s next?
Dad: I think we’ll continue to do work with AST, the American Society of Transplantation. That’s who invited Gavin to the transplant summit, and I think we’ll continue to partner with them. They do a lot of advocacy on Capitol Hill to try and get bills passed that help transplant patients. So I think Gavin will continue to be a part of that. I think the whole goal right now is to help people to understand the importance of organ donation and remind them to check that box on their driver’s license. That’s really all it is. One of the bills AST is working on, you know, some countries are now opt out so when you get a driver’s license you have to say that you don’t want to be an organ donor. If you don’t mark that then they automatically assume that you are. It just makes it that much easier. Also some of the issues are with Medicare and Medicaid not covering the anti-rejection meds for more than six months. And it’s something that he’ll be on for the rest of his life.
Gavin: I’m just going to live my life.
Join 82801 — and roughly 2,000 others — in following Gavin’s Journey on Facebook @gavinsjourney2015, where you can also donate towards his transplant expenses of over $100,000.00 through the Children’s Organ Transplant Association (“COTA for Gavin M”).