A chance MoPop encounter, a request for help and a song request...

zebra27zebra27 Posts: 214
edited August 2018 in The Porch

Long read but please take a minute...

I have wanted to post this for a long time but always chickened-out. I don't post here much. There are a lot of important causes, so why would mine be more important than all of those other people?

Today I was at the MOPop exhibit. There was a woman being shown around with her daughters. It occurred to me it was Mrs Vedder. I would forever regret if I didn't seize this opportunity and ask for help. 

So with tears in my eyes, I asked for help from her like I am doing from you all now. Even if the help is just spreading the word. (And I just want to thank her for listening if someone passed this along...)

My son Max is 5. There is nothing more I want than to bring him and his little brother to a show when they're old enough. 

In February he was diagnosed with a terminal illness called PKAN. His life expectancy is mid-teens. This is truly a one-in-a-million disease. 

There is currently no cure for it. There is, however, an incredible group of doctors from the Oregon Health and Sciences University in Portland working incredibly hard on a cure. They have established a foundation to raise the money needs to start a clinical trial of the drug. 

Below are links to the Spoonbill Foundation as well as to our group gofundme page (my little dude is shown at 1:03 of the YouTube video!) All of the proceeds go directly to the Spoonbill Foundation. 

If you cannot donate, please share it. That's all I can ask. 



Right after we got the diagnosis I thought about Steve Gleason at Wrigley Field and how he introduced Inside Job. I shared the YouTube clip of it with my wife. It's really hard some days but I try to keep the lyrics to that song in mind...

"How I choose to feel is how I am.

I will not lose my faith

It's an inside job today"

This band and this community is so amazing. Thank you for taking the time to read this. 




Post edited by zebra27 on
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