A Former Classmate Passed Away. His Son Needs Our Help.

I learned to drive when I was around 18 years old. I walked to and from school every day, my parents drove me everywhere, and my friends also lived close by, so I didn’t have any reason to want to learn to drive. Then my parents bought me a car for my high school graduation and I figured there was no better time to learn to drive (haha), so that Summer I enrolled in a Driver’s Ed program at a local high school.

Unbeknown to me, one of my classmates, Shane, ended up doing the same, so we took Driver’s Ed together. It was nice to get to better know someone whom I had never really talked to in high school but who was actually rather kind. I understood why he was so well-liked. Shane was also hilarious, always looking to make those around him laugh. I didn’t like driving on the freeway and I remember he made a joke about that while I was driving our little cohort on the freeway, which made me laugh really hard. I don’t recommend it (if I’m even remembering it correctly) but it was nevertheless hilarious.

Fast-forward a few years, and I came to find out of his passing. It felt like most of our classmates showed up to the Funeral Mass. (Our graduating class consisted of less than 200 students.) Rumors as to his possible cause of death abounded and I don’t want to humor any of them, but that was perhaps among the saddest high school reunions ever, and it only happened within three years of our actual graduation.

Over the years I’ve semi-kept up with news from my Alma Mater, though not all that proactively. I’ll sometimes snark on updates it shares because they’re silly but aside from that, I haven’t made looking it up a focus or anything.

The name that can save a boy’s life

Then one day earlier this month as I came across a name that I could’ve sworn I had heard plenty in my “past life” as a high schooler. The headline went along the lines of, “Local firefighter dies as son fights deadly disease.”

My first thought was, “Wow, I KNOW him.” One of our former neighbors is a firefighter so I also thought, “Either this guy used to live by us or I went to high school with him,” but I was increasingly sure he and I had been classmates instead.

I didn’t have easy access to my yearbooks right then so I looked him up with the name off our high school and, unfortunately, I was able to confirm that he and I in fact did attend high school together. His name was Anthony.

I don’t exactly know why the news hit me like a ton of bricks. Maybe it was the fact that we both attended the same school and many of the same classes, that we’re around the same age, that he still lived in the county, that our kids aren’t far apart in age, that he left behind a young, beautiful family, that one of his kids is fighting a deadly disease and the tremendous weight he must’ve been carrying from that (I’ll get to that), or all of them combined, but I wasn’t able to focus on much else for the rest of that day.

I can’t imagine how much his wife and kids miss him and how much he must’ve been struggling with his son’s diagnosis. He, too, was kind to me in high school (so much so that even my mom remembered his face when I shared the article with her), and his absence seems to be wide-reaching.

Because I’m so out of the loop, and despite him being a fellow Utahn, I had no idea one of his sons has been battling a deadly disease.

Apparently the whole family’s been in the news and even organized plenty of events to help their cause. So in honor of Anthony and his son Kiri and the rest of the family, I want to tell you about an ugly disease and invite you to do something that could save a life.

CALD

According to the Child Neurology Foundation’s website, “Cerebral adrenoleukodystrophy (cerebral ALD, or CALD) is a genetic disorder. It is the childhood-onset form of ALD. …”

I saw it explained elsewhere as cerebral adrenal leukemia.

ALD leads to the accumulation of very-long-chain fatty acids in the brain and adrenal glands. The very-long-chain fatty acids (VLCFAs) cause damage to the myelin sheaths in the brain and spine. Myelin is the insulating membrane around nerve cells required for their normal functioning.  

About 1 in 20,000 males are born with ALD. Females are typically only carriers. Females may have no or very mild symptoms.  

Or, in the words of Anthony’s employer:

West Valley City Firefighter, Tony Duke-Rosati, is facing every parent’s worst nightmare. His son, Kiri, has Cerebral ALD- a rare, aggressive brain disease that begins by silently destroying the brain—stealing speech, movement, and vision—until the body shuts down completely.

The sooner a donor is found, the better the chance to stop further brain damage! 

How you can help

It’s fascinating, scary, and sad stuff, and I encourage you to read more about it so you can get but a taste of what Anthony’s son Kiri, his mom, and siblings are going through. If not that article, then check out the website HOPEFORKIRI . ORG, which was created to help the little boy find a bone marrow donor.

Read more about Kiri’s story on this (archived) Deseret News article about him and his family. There you can also find out how you could potentially help.

Have you ever thought about donating your bone marrow? I admit I hadn’t until this news. The process doesn’t sound all that bad. It starts with filling out a questionnaire, getting a free kit for swabbing your cheek in the mail, and then hearing back on a decision. If you “pass,” you get added to a registry, though apparently, a small fraction of the thousands already in the registry (many of whom Kiri’s family’s helped with adding!) are ever able to actually donate because the match has to be 1000% (I’m exaggerating but you get the idea) precise.

I’m still thinking about doing this. My husband opposes the idea because he fears other organ-donation organizations somehow getting ahold of my information and then playing footsies over who can harvest my organs the quickest later on since I would’ve donated bone marrow. (Even though my Driver’s says that I’m not an organ donor, we have a healthy distrust of the government, so honestly, who knows…)

If you’re called to at least join the registry to later potentially help save a life, then check out the Hope for Kiri website to find out more about getting a free kit mailed to your home.

If donating bone marrow isn’t something that you don’t think God’s leading you to at this moment, then consider donating blood at your local Red Cross or Blood Drive. I’ve donated blood before and it’s not bad at all. It’s quick, practically painless, and also saves lives.

But if that’s not feasible for you, then please share this post, related news articles about Kiri, and/or any of the social media posts from the family’s account. Tell your relatives and friends!

Eternal rest grant unto him, O Lord,
and let perpetual light shine upon him.
May the souls of all the faithful departed,
through the mercy of God, rest in peace.
Amen

Lastly, please definitely pray for Anthony’s soul and especially for his family. Pray that Kiri may find a donor soon.