Tuesday, June 11, 2013

MIRACULOUS MAY Part I

A few weeks ago I felt really stressed as I tried to figure out all the logistics of Nami's out-of-state brain surgery. I had been working for months to put everything together for this surgery and was feeling extremely nervous about the cost. I had researched many organizations and was doing all I could to get the surgery without having to lose our house. Of course we'd lose it if we needed to, but I was going to try every last charity, government organization, etc. in order to help our son. Although it was against everything that felt comfortable for me, in addition to all the other resources I was looking into I decided to ask for help from my coworkers. I sent the following email:

Dear Colleagues,

I’m a keep-to-myself kind of girl, but these past few years have pushed me to do things I never thought I’d do; one of those being to open up and ask for help. So, although this is a difficult thing for me to do, I am asking for your help.

For those of you who don’t know, my 4 year old son was born with a condition called tuberous sclerosis. This causes tumors to grow on his vital body organs. He has hundreds of brain tumors, heart tumors, kidney tumors and cysts and eye tumors. He is autistic and has uncontrollable epilepsy. Our biggest concern of the moment is his seizures. He has been to the emergency room multiple times and life-flighted twice when he stopped breathing and had to be intubated. During this school year he’s had over 100 seizures on most days. Somedays he has upwards of 300 despite being on up to 5 anti-epileptic medicines. We have completed extensive testing in Utah for brain surgery to help, but his case is so complex that even the best doctors here don’t feel comfortable with doing it. We have found one of the top epileptologists and top brain surgeons for his condition who will be operating on him in NY. We will have to live there for at least one month to get this done.

Obviously the cost of all of this will be a lot. Our insurance will cover some of the expenses, but we be left with a lot of expenses still. I tried to think of something easy for people, so here it is: I know there are a lot of soda drinkers out there (me being one), and I was wondering if you could smash your used cans and drop them off in my room. I welcome them from your homes, your friends’ homes, etc. I will then recycle them and use the money to help pay for my son’s expenses. I appreciate all your support.

I sent this email with the hope of being able to raise enough money to buy a plane ticket for my husband by collecting cans for the remaining month of school. I never could have predicted what happened next...

Initially I started receiving anonymous donations. I was extremely uncomfortable, although very grateful, for the generosity of these people. Our principal asked for permission to talk to the student council and I received a couple of emails from teachers asking for permission to try a do some fundraising for Nami. At some point the newspaper adviser took the information to her newspaper staff who got busy and things seemed to explode. There is no way to name all the people that helped because there were so many, but here is some of what resulted:
  • It all started with a kickoff at lunch with a lot of fun entertainment, the halls were filled with posters and flyers for the many events to come.
 
  • Teachers and students then formed rivalries and competed in Penny Wars which resulted in many students donating hard-earned and saved money, bringing money from home, teachers donating and teachers committing to all sorts of punishments if their classes lost. The smack-talk between the front office and counseling office livened up the last weeks of school.

  • Clubs and groups put on a "Carnival for a Cause"
  • Many organizations added a tribute to Nami as part of their final performances including a Miracle Minute by the Dance Team, a Dancing with the Teachers Competition by the Ballroom Team, A Benefit Choir Concert and a Jazz Improvisation performance by the Jazz Band.
 
  • There was an all-night volleyball tournament,
  • a movie night at a local movie theater where at least 2 movies were sold out,
 
  • and a month-long fund-raiser at a local frozen yogurt place.
  • Faculty and community members did lunch-time story-telling, made and sold sugar cookies to the faculty, donated baskets, beautiful hand-made quilts, and a personal training session to be auctioned off. 
  • This year, the annual Pigstock concert at the school was done in Nami's name.
 
  • A co-worker is selling his adorable e-book as part of the fundraising. (Book on Amazon)


  • Word spread to many through texts and so many from the community joined in with donations: from local businesses to countless individuals, from those who have no money to give to a 4-year-old girl who gave Nami her shiniest penny. I cannot express my gratitude to the person who anonymously donated an extremely generous $5000 match.
  • And, of course, the CANS! There were loads and loads of cans that the principal ended up driving daily to be recycled. People were coming from all over to bring them in. Students even spent time gathering cans from garbage cans in parks…WOW!
I still can't believe this all happened.Things like this don't happen in MY life. It truly is miraculous!
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