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