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By Alyce Collins and Viet Vu
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“Dad, it’s time to open today’s pack of Pokémon cards!”
It was a daily ritual for Justin and me. Every morning he would ask if we could open some packs together. We loved sorting through the cards to see whether we'd found anything new.
Justin adored every second of it.
Read More on My Turn
My children, Justin, 5, and Sylvia, 4, mean everything to me. I co-parent with their mom, and I usually have them on my days off.
At the end of summer, Justin was due to start kindergarten, while Sylvia started preschool. But before term started, their mother wanted the kids to enjoy a summer vacation. So, she took Justin and Sylvia to visit her family in Portland, Oregon for a few days in July.
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However, on the night of July 2, Justin began complaining of stomach pain before going to bed. The pain persisted throughout the night, leaving him unable to sleep properly. He also vomited, leading his mom to wonder whether he had eaten something that disagreed with him or caught a stomach bug.
Unfortunately, the stomachache never subsided.
The next day, Justin was extremely lethargic and not acting like his usual self. Even if he was sick with the flu, Justin would still be very energetic and just wanted to play, so this was really out of character.
Since Justin was still very ill, his mom took him to the ER on July 3. Doctors ran tests and did an ultrasound, suspecting Justin had appendicitis.
Yet, after a few hours, they still couldn’t determine what was wrong.
The hospital referred him to the local children’s hospital that night. There, he underwent additional blood work, another ultrasound, an MRI and a CT scan. But, even after all those tests, there was still no clear diagnosis.
All the while, Justin’s condition worsened. He grew weaker, became delirious and began hallucinating, telling his mother he had to pick something off the ground when there was nothing there.
‘I Felt So Confident We’d All Come Home Together’
As doctors continued searching for answers, Justin deteriorated so much that he was transferred to the ICU on July 4.
When his mother called and told me that our beautiful son was in the ICU, I immediately booked a flight out of Colorado for the next morning. Waiting for the flight was awful – and it didn’t get any easier once I was on board. I was so worried about Justin.
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I kept trying to reassure myself that he would be fine, willing myself to stay optimistic. He was a strong and healthy boy who had never experienced any serious health problems before, so I thought he would be fine.
In fact, before I left for my flight, I made sure to secure Justin’s and Sylvia’s car seats in my vehicle because I felt so confident that we’d all come home together.
I had no reason to believe otherwise.
When I eventually got to the hospital in Oregon, Justin’s mom walked me through everything that had happened over the last couple of days. She told me that Justin had been put on life support and dialysis because his heart and kidneys were failing.
My heart sank. My 5-year-old son was fighting for his life.
I tried to stay hopeful, but when she told me the situation, everything became so bleak. Justin seemed to be slipping through my fingers.
He was so excited when he left for the trip just days before. Now, he was on life support with a 50/50 chance of survival.
‘Makes Absolutely No Sense to Me’
When the medical team made their rounds on the morning of July 6, the attending doctor in the ICU told us that she had been up all night sifting through endless medical journals to find anything that bore any semblance to what Justin was going through.
Eventually, she found something.
A condition called idiopathic systemic capillary leak syndrome, also referred to as Clarkson’s disease. It causes plasma to leak out of blood vessels, into muscles, tissues and organs. It’s a rare disorder that affects fewer than 500 people worldwide and is rarely seen in children.
I had never even heard of it, and neither had anyone on Justin’s medical team. Between all the ICU doctors, they had more than 100 years of medical experience, yet none of them had ever heard of it. Likewise, I’ve worked in the medical field for more than 12 years and had never come across it.
Nonetheless, I figured that, since they had pinpointed what was affecting Justin, they’d be able to save him.
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The symptoms of Clarkson’s disease usually begin a day or two before the attack starts (in what is known as the prodromal phase). They usually include abdominal pain, fatigue, headache, thirst and nausea. The cause of the condition is unknown and, while there is no cure, symptoms can possibly be treated if caught early.
Unfortunately, if the condition progresses, the body starts to shut down.
Why does my son have to have this incredibly rare disease that nobody has ever heard of? It was a question I couldn’t help but ask myself repeatedly.
Justin was such a strong, healthy boy, and then his body turned on him out of nowhere. It makes absolutely no sense to me.
‘He Had Given Us One Miracle Already’
On the afternoon of July 6, doctors came into Justin’s hospital room and told us they would be surprised if he made it through the night.
“You should prepare to say your goodbyes,” they warned us.
That evening, we had Justin’s extended family join us at the hospital (my relatives flew in earlier that day) to say their goodbyes. Everyone had their own individual visits with Justin. His older half-sister sat with him for a while before his mom and I had our time with Justin. We told him that we loved him and were so proud of him.
We told Justin he had fought long enough and that, if he needed to rest, that was OK. Justin always wanted to be the winner in the end.
After everybody left the hospital, Justin’s mom and I pretty much sat around waiting for someone to come in and tell us that Justin was gone. But, to our amazement, Justin made it through another night.
He had given us one miracle already. Maybe he would give us another one.
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Regardless of how much hope we had, Justin’s condition kept worsening. On July 8, doctors told us we could choose to let him go peacefully, otherwise a catastrophic event might take him from us.
Justin held on for as long as he could—two whole days after we were told he wouldn’t survive the night. So, this time, we were able to plan how to say goodbye to our beautiful boy.
He loved being outside and surrounded by nature. In fact, if he had it his way, Justin would stay outside forever. We asked the medical team to take Justin out to the hospital garden so we could say our last goodbyes.
He was surrounded by so many people who loved him: grandparents, aunts, uncles, cousins, and family friends. We took turns reading bedtime stories to him, just like his regular nightly routine. His mother, older sister and I were the last ones to read him a story. We said goodnight to him and then laid our heads on his hospital bed while the doctor turned off his life support.
Justin held on for as long as he could, but he lost his fight on July 8.
'There Is a Giant Shadow Looming Over Us'
Every day without Justin is tougher than the last.
A huge part of our lives has been ripped from us, and now we have to figure out how to keep living. We’re all handling grief in our own ways, but you can tell there is a giant shadow looming over us.
I’m going to grief counseling to work through my emotions. As for Sylvia, she doesn’t know how to process what happened yet. She knows that Justin isn’t coming back, but mostly, she goes on with her day as a typical 4-year-old. Every now and then, she says something like, “Justin likes this song” or “remember when Justin did this?”
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What happened to our family is rare, and I don’t want any other family to endure this. I want to honor Justin’s legacy by raising awareness for Clarkson’s disease, so I decided to use something he loved to achieve that.
I’m using our love of Pokémon cards to educate others on Clarkson’s disease.
I started sharing videos on social media of me opening Pokémon cards while discussing the condition that took my son’s life. The Pokémon community is global and filled with families, so I knew our story would reach every corner of the world.
While my son may never get to open another pack of Pokémon cards, I am doing it in his honor.
I want parents to cherish every moment they have with their children. Don’t take them for granted because you never know when their last hug, kiss or snuggle will be. You might make a fuss about getting the kids dressed or helping put their shoes on but, when you don’t have the opportunity to do that ever again, you will regret not doing so.
Nobody is promised tomorrow. Death doesn’t care how old or how healthy you are.
I urge parents to put their phones down and pause their chores because they will still be there 10 minutes later, but the special moments with your kids aren’t always going to be there.
Viet Vu, 39, is an X-ray technologist who resides in Thornton, Colorado. Following his son’s death, Viet has been raising awareness for Clarkson’s disease on social media through Pokémon cards.
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