Twelve-year-old Alan Louie has been in and out of hospitals since he was a baby. Born with kidney disease and renal failure, Alan is no stranger to blood draws, medications and doctors. For him, it has always been a part of his family’s routine. He’s never viewed himself as being sick though, and it’s something his mother, Ann Marie Louie, has always encouraged him to believe: He can do anything.
It only makes sense that Alan’s motto in life would be, “Why not me?” – a phrase he picked up from one of his role models, Seahawks quarterback Russell Wilson.
It’s a message he’d like to pass along to others facing a similar circumstance, one that he believes is especially important now, in recognition of Organ Donor Awareness Month.
Every week another appointment
Alan usually visited the hospital every week until he turned 1. After that, it was every other week until he turned 6. After that, it was every three months until he turned 12.
It was a routine the family had perfected, and since Seattle Children’s Hospital was known for having the best phlebotomists in the region, they visited regularly for lab work.
It was, however, only a matter of time until Alan would need a kidney transplant. They made an appointment to see Joseph Flynn, MD, MS, division chief, medical director of dialysis at Seattle Children’s, in May 2013. By June, the family had their plan in place and on July 5, 2013, Alan was listed for transplant. It was a reality they knew had been coming since birth.
A family history, a secret of health
The Louie family is no stranger to kidney disease; they know it all too well. But this didn’t make the experience any easier.
Alan’s father received a kidney in October 2012, and both Alan’s cousin and uncle have received a kidney transplant too. Unfortunately, the list of family members affected by the disease goes on and on.
“Having the disease in our family prepared us for a lot, but it doesn’t prepare you for the twists and turns you don’t expect,” said Ann Marie.
“For many years we didn’t talk about the disease,” said Ann Marie. “We always made Alan believe he could do anything, but the more we talked about it, the more we came to terms with it. It took years for me to be able to tell people. We never wanted Alan to feel singled out.”
Last year, Alan signed himself up for track. Even while waiting for a kidney, Alan didn’t let that stop him from participating in the activities he loved. In his eyes, he wasn’t sick, or different.
“Our saying was always ‘Go ahead,’” said Ann Marie. “Of course, we were on standby just in case anything happened, but we didn’t give him a chance to think he was different. And, of course, we received the ok from our doctor.”
Finding a match
Almost one year after his father received his kidney, the Louie family got a call. A transplant coordinator from Seattle Children’s was on the other line, they had a kidney for Alan.
On Halloween in 2013, Alan went into surgery. Everything went smoothly. He had a new kidney.
“The surgery alone was the easiest part of the experience,” said Ann Marie. “We always knew post transplant would be the difficult. The one thing that people don’t seem to understand is that post operation and up-keep is one of the most important phases of any transplant.”
After the transplant there were some hiccups, but Alan recovered well. He had to feel better if he wanted to see Macklemore, which was something he’d been hoping to do. And in December, Alan, along with thousands of others, crowded into Key Arena to see Macklemore and Ryan Lewis preform. Made possible by Make-A-Wish, his experience there was nothing short of incredible.
A commonality between Alan and quarterback Russell Wilson
Unfortunately, Alan wasn’t out of the hospital for long. He needed to be seen for follow up appointments and lab work. His routine back and forth between home and the hospital continued. But little did he know, one of these trips would be extra special. Russell Wilson happened to stop by to see him during one of his visits.
“Russell Wilson’s quote from his father, ‘Why not me?’ really hit home for Alan,” said Ann Marie. “After meeting Russell, it was even more inspirational. We kept telling ourselves the kidney was just a bonus to meet Russell. It was meant to be.”
After meeting Wilson, it was easy to draw a comparison between the two of them. Alan always believed he could do anything, or be anything, just like Wilson. They held a similar ideology.
Today, Alan still believes he can be anything he puts his mind to. For now, however, his mother has him focused on the not-so-distant-future. Alan will start 8th grade in the fall and apply for high school.
It’s not a cliché
The Louie family is finally settling into a new normal, life after transplant, and continuing to keep an open dialogue about their unique family history. They understand Alan will always be more at risk than other children, but they don’t deter him from doing what he loves.
“You would never think he was sick,” said Ann Marie. “He doesn’t seem like a sick kid, nor does he look like one. It’s not a cliché. We raised Alan to feel normal. He doesn’t think twice about it. He really can do anything.”
Ann Marie also has some motivational words for families going through similar experiences.
“Somehow you find your way,” said Ann Marie. “We did it. You can make it through. The disease started out as a negative, but we finally found ourselves. We finally accepted it and were able to talk about it with others. Kids don’t have to feel singled out or like they’re in a detrimental situation. My advice is to keep a positive open conversation.
- Kidney Transplant Program at Seattle Children’s
- Seattle Children’s Nephrology