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How a Boy’s Passing Affects Everyone in Our Hunter Syndrome Community

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I have not lost my child to Hunter syndrome — yet. Even though I type the word “yet,” I gloss over it my mind. For me, “yet” equals years and years. It’s not worth thinking about in any other terms. I simply can’t.

But when I read about a boy named Tucker who just didn’t wake up, my mind begins to wonder. I can feel the pain of Tucker’s mom.

Tucker is forever 15 now. Although I never met him or his parents in real life, I knew them through an online Hunter syndrome support group. While parents of children with Hunter syndrome know what will happen to them, we’re never prepared. Ever. How can anyone be prepared for losing someone they love, especially if that someone is their child?

There is no crash course.

There is no “how to.”

There is just grief, shock, pain, heartache and darkness.

I cried for Tucker, for his mom, Casey, his dad, Jason, his brother, Dylan, and all of his extended family. And I cried for all the moms who share my path. I cried for me, too.

It was also another little boy’s birthday — Logan. He would have been 13 had he lived.


I cried for his mom and his family and for Tucker’s mom and family again.

How does Logan’s mom carry on?

How will Tucker’s mom carry on?

And then a seemingly selfish question popped into my head: How will I carry on?

How does any parent carry on?

I don’t know.

I imagine the only people who know the answer are those who have lived through it. I don’t want to know, but Hunter Syndrome doesn’t care about what I want.

It’s a relentless condition. A greedy, sneaky condition that takes our children away in the middle of the night, or it waits until our children have nothing left to give.

I know a lot of parents will be cuddling their kids extra tight because Tucker left his family without warning.

There is a whole community grieving. We’re grieving with a family who lost their 15-year-old boy. We’re all hoping and praying it won’t happen to our children, but in the deepest darkest hour of the night, the realization hits us and we know.

The story of Tucker and Logan’s passing and those who left this earth far too early may never make it into mainstream media. And they may never be a major campaign to help find a cure, even though there is research and a clinical trial. This rare disease simply isn’t affecting enough people, and that is also the harsh reality we families have to live with.

A version of this post was originally published on

Lead photo source: Thinkstock Images

Originally published: August 8, 2016
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