Just a "zebra" trying my best to live life to the fullest with EDS and POTS...and loving the ride.

A Dream Realized

Written by Katie. Posted in Ehlers-Danlos Awareness, Family, Favorites, Fundraisers, Goals, Memorable Experiences, POTS Awareness

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It all started as a dream.

And then the dream slowly turned into a ginormous goal.

And then the dream that had become the goal, finally became a reality this week.

I don’t even know where to start.  So much has gone into this labor of love, that I am sure I am going to leave details out as I attempt to tell the story.

First of all, if you have been keeping up on this blog, then you know that last year, I was very sick.  I was eventually diagnosed with Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia Syndrome, and things have slowly improved as I have learned how to manage both diseases.  If you have also been reading all along, you know that my sister Allie, almost lost her life at 20 years-old.  She was diagnosed with an often fatal disease, Polyarteritis Nodosa Vasculitis after 48 days in the hospital, and has been on huge amounts of Prednisone and chemotherapy drugs.  She is currently in remission and we all pray that it stays that way.

Throughout Allie and my struggles, we have leaned on each other, our family, our friends, and our faith.  Since our diagnoses, we have discussed many times how we need to do something to try to make these rare, crazy diseases that we have been “blessed” with more well-known to the general public.  We have become passionate about spreading awareness, advocating for others struggling with these diseases, and finding ways to donate money to research, in hopes that someday soon there will be cures for EDS, Dysautonomia, and Vasculitis.

Last year, my Aunt Madalena introduced me to Chris Trapper’s music.  Chris is a singer-songwriter from Boston.  His song, “Avalanche” became my anthem as I worked hard to get to a point where I could return to work, and life in general.  I shared the song with Allie along the way, and she and I both agreed that it was the perfect song for the two of us, as we both faced our “Avalanches.”

I was lucky enough to get to go see Chris Trapper in concert last spring with my Aunt Madalena, Aunt Laurie and cousin, Jenny.  I was fascinated by his talent, and the way he connects with the audience.  It honestly felt like when he was singing, he was only singing to me.  Since that concert last April, I have fallen in love with all of Chris’s music.  It is an understatement to say that his beautifully crafted songs have gotten me through many tough days.

Before a Chris Trapper show, you are able to go on his website, and request a song that you want him to play.  Well, I am sure you can all guess what song I requested.  I wrote something like this on his website, “I would love to hear ‘Avalanche.’  It has helped get me through some tough medical issues this year.  I can’t wait to see you in concert.”  I received a confirmation email that the “Chris Trapper Team” had received my request.

As I sat in the audience on the night of the concert, I kept wondering, when MY song was going to be played.  Well, it got to the end of the show, and no “Avalanche.”  Despite my love for the other songs he played, I was still bummed.  When my Aunt Mada and I went to the bathroom afterwards, we realized that Chris was by the bar signing autographs and meeting and greeting his fans.  We knew we had to grab our chance to meet him, so armed with our cameras, we got in line.  When it was our turn, we asked if we could get a picture with him.  He was extremely gracious and took a few with us.  And then I knew I just had to go there.

I told him, “Next time, you should really play Avalanche.” Chris immediately responded with,  “Oh, you must be the medical….”

I thought he was going to say “girl,” so I cut him off and said, “I’m Katie, the one who requested it.”  I told him that since I was diagnosed with Ehlers-Danlos Syndrome and Postural Orthostatic Tachycardia, it has really helped me get through a lot of the last year.

He apologized profusely, and said he thought I was going to be at the NEXT night’s show, and he had written it down for tomorrow’s set list.  He promised he would play it for me sometime.

Well, the story about that night does not end there.  When I returned home, I found that Chris had friend requested me on Facebook.  I became a giddy little school girl, and quickly accepted.  Within a few minutes, I received a message from him, apologizing again that he had not played “Avalanche” and that he would play it for me for sure, the next time I saw him.  He even invited me to be a VIP guest for the next night’s show in Ann Arbor. But since I had already overdone it and was sick, I thanked him but told him I had to decline.

After that experience, I was very taken with not only this man’s music, but his genuine kindness.

Fast forward to November.

My Aunt Laurie sent me a message, suggesting I contact Chris to see if he would be willing to come to Lansing and do a concert.

The DREAM was born.

After much hemming and hawing, and a lot of encouragement from my aunt, I pulled on my big girl pants, and sent him a Facebook message, asking if he would ever be willing to do a benefit concert for Ehlers Danlos, Dysautonomia (including Postural Orthostatic Tachycardia Syndrome), and Vasculitis.   I even added, “What a great way to finally get to hear “Avalanche.”  I saw that he was set to be in Michigan already for a show on April 13th, so I asked if April 14 would be a possibilty for him to put on a benefit concert.

Not knowing if I would hear anything in return, I went on with my life.  A couple of weeks later, I received a response from Chris saying that he would come if it worked with his tour schedule, and that he had to check with his manager.   I believe I titled my email to my aunts and sisters with his response, “Holy Crap Balls.”  I really could not believe that it was even a possibility.

You never know if you don’t ask, right, Aunt Laurie?

From there, he told me that if I emailed him the “specs” for my show idea, he would forward all of the information to his manager, and she would be in touch.  My aunts, sisters, and I scrambled into action, working hard to find a venue, and to see if we would be able to meet the requirements that were spelled out in Chris’s contract.  Just before Thanksgiving, we had found a venue, and they said they would put a hold on it for the 14th, until we knew for sure if it was going to happen.  I emailed all of the details we had researched to Chris, and he sent me a message back that he sent it all to his manager, and she would be in touch.

Then we waited.

And waited.

I ended up giving in to my inability to have any patience and emailed her to see if she had received everything.  I received a response after Christmas from her that unfortunately, it did not look like Chris could do a public show that night because of the rules and regulations of the venue he was performing at on April 13th.

Roadblock #1.

We ended up emailing back and forth multiple times trying to come up with a different date, but it just was not working out with Allie’s, Chris’s, and my schedule.   I was starting to lose hope that it would happen.

THEN, on January 30th, I received an email from Chris’s manager, telling me that things in Chris’s schedule had shifted a bit, and if I still wanted the date of April 14th, they would make it work.  I will remember that day forever.  All hope was restored.  I emailed her back that we would make that date work one way or another.  I just had to confirm that the venue we contacted back in November was still available.

Well, we found out that the venue that we had on hold had given our date to another group without letting us know.

Roadblock #2.

We now had the date, and Chris ready to come, but we had no venue for the event.  With a LOT of scrambling and help from my family, Brad, and my friend, Jan, we worked our behinds off trying to find a different venue.  The harder we tried the more we seemed to strike out.  Everything was booked and we were getting desperate.

This was when my Aunt Laurie took to the wonderful world of social networking, and asked the members of the Michigan State Red Cedar Message Board if they had any suggestions.  We got a few great leads, and found out that three of the venues that were suggested were available.  I ended up quickly setting up meetings with the three different venues.  They were all amazing, and willing to accommodate our requests.

But it was when I ended up checking out Lou and Harry’s in East Lansing (on Chandler Road~the old Small Planet) that I immediately fell in love with the space, the stage, and the possibilities that the venue offered.  My Aunt Mada worked hard to send our plans to the event coordinator, and to get the ball rolling.

Since then, I have had three meetings with Harry, the owner,  Audrey, the event coordinator, and Scott, the general manager.  We have hashed out many of the details involving the event.  My sister, Kristen who happens to be a lawyer, drew up the contract, and on Thursday night, Harry and I signed the contract to make the event official.  Thursday night, I also sent the Artist contract between Chris’s manager/record label and myself back to his manager signed.

The show and the venue were a done deal.

Holy crap balls is right.

The dream that my sister, Allie and I have shared will become a reality on Saturday, April 14th.

We keep pinching ourselves.

As you can imagine, there is SO much work ahead of us.  Press kits, PR, flyers, mailers, websites, promotions, tax exempt stuff, gathering information and working with each of the charitable organizations, working on the show’s program, setting up PayPal and online ticketing for the event, contacting anyone and everyone we have ever met, meeting with Lou and Harry’s once a week, verifying sound requirements, and the list goes on and on…

But, we have the most AMAZING team of people working with us on this event, and I could not be more thankful. With Lou and Harry’s, Kristen, our aunts, our parents, Brad, our cousin, our close friend’s, Jan and Sebastian, and a few other friends working closely beside Allie and me, we are working like maniacs to make this event a huge success!

This event means the world to Allie and I, and we would be so honored if you could share the evening of April 14th with us.

I will be posting SO much more information about the event in the next week, but here are some important details:

What: An Evening with Acclaimed Singer-Songwriter, Chris Trapper, to Benefit Invisible Illnesses

Proceeds will be donated to: Ehlers Danlos National Foundation, the National Dysautonomia Research Foundation, and the Vasculitis Foundation.

When: Saturday, April 14 from 6-10 PM

Where: Lou and Harry’s Sports Bar and Grill, 16800 Chandler Road, East Lansing, MI 48823

Ticket Price: $30, (will be on sale online or at Lou and Harry’s within the next week)

**This will be an all-ages event. 

**Tickets will go on sale as soon as we get our accounts up and running, and the website launched.  I will be sure to let everyone know when that happens!

Questions in the meantime?  Please email me at katie@lifeasazebra.com

Please, please, please help spread the word!  Allie and I thank you from the bottom of our hearts!  We hope you can join us for an evening of  information, entertainment, awareness, and hope.   

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