When You Outlive Your Generation

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I grew up in the 70’s and 80’s.

While we may not be termed the “greatest generation,” we are still pretty fantastic. We grew up on neon and Michael Jackson, pop rocks and Coke, E.T. and Stand by Me.

And lately we’re watching This is Us on T.V. and Stranger Things on Netflix and saying, “Yeah, that’s how it was. And it was good.” And for the most part, my peers are still alive.

What is a generation?

Most experts agree that a generation is 20-25 years. It’s the people who were all born around the same time, have many of the same experiences, memories, and opportunities. It’s your mother’s generation, versus your child’s generation.

Born in 1973, I’m smack dab in the middle of Generation X.

But the generation of my youngest son has no fun, quirky name. And even once they adopt Generation Z, Generation Alpha, or the Screener Generation, he wouldn’t really be a member.

Generations grow up together and grow old together.

My son is growing up in the Heartbreak Generation.

Diagnosed with Hunter Syndrome (also known as MPS II) at two years old, his expected life span was 10-15 years old.

He turned 10 this year.

We’re watching as children diagnosed in this Heartbreak Generation are getting feeding tubes to make up for a lost ability to eat my mouth. They are getting shunts to drain the excess fluid from the enlarged skulls. They are getting “fancy” wheelchairs and standers and bathing chairs and stair lifts, all to make up for their lost ability to walk, stand, or even move intentionally.

Their parents are choosing headstones.

If we can help it, advances in science may make this the last generation that dies from Hunter Syndrome.

What do you do when your child outlives his generation?

You try to save them. Desperately.

We saw this writing on the wall, unfortunately, almost seven years ago when my son got into a clinical trial that most of kids with Hunter Syndrome weren’t eligible for. And many kids with other forms of MPS or other rare diseases had no options as well.

He got a chance at life that we grabbed with all our might and wished that we could multiply like the loaves and the fish.

But it wasn’t our picnic. We didn’t get to distribute a life-changing drug to save all the kids we loved.

So we organized our own picnic.

We started funding research that was designed to save them all.

But research, even the kind we fund and design and plan ourselves, can be slow.

And it’s even slower without money.

That’s where we are now. We are over $400,000 into a $2.5 million effort to save the lives of children we love. And every day we don’t have it is another tear, another surgery, another heartbreak, another death.

We wish the world knew them and loved them as much as we did. Because then we know it would only take a day to raise that money. $10 from 200,000 people.  $100 from 20,000 people. It’s simple math. It’s simple exposure.

It’s simply love. 

Our son is already outliving his Heartbreak Generation. We just don’t want him to outlive another one.

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To help us fund this gene therapy clinical trial for Hunter Syndrome, please visit ProjectAlive.org/donate

If you have a platform and are willing to share our mission with a wider audience, please contact me

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Last modified: July 10, 2017

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