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

zebra27zebra27 Posts: 214
edited August 10 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. 

https://www.gofundme.com/give-pkan-warriors-a-chance

http://nbiacure.org/spoonbill-foundation/

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. 

-Dennis


#teamMax

#beatPKAN


Post edited by zebra27 on
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