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Thursday, May 23, 2013

MAY! may it please end.

Just one week of May left. I think I can make it. If I shut the curtains turn off the lights and phones maybe everybody will think I’m out of the country.

Seriously this has been one of the longest months of my life.  Jonny’s run was just on the 4th and it feels like a year has passed since then.

May 6th is our wedding anniversary, 7 years strong.  May 15th is International MPS awareness day. We didn’t celebrate either date.  May 10th marks three years since Jonah’s diagnosis. We knew on our wedding anniversary back in 2010 that Jonah had an MPS we just didn’t know which one.  We tried to celebrate then, we went out for a lovely dinner which turned into a pathetic attempt of trying to conjure up some happiness.   A few days later Jonah was diagnosed, it was a horrific period in our lives.  In our education of the disease we learned it was MPS awareness day too.  We were both like... of course it is! You know how hard it is to rise to the occasion to celebrate an event that reminds you of the worst moment in your life.

Jonah has gotten so big and he’s such a cool kid.  He’s picked up the habit of giving you a thumbs-up, when he feels that you have done something good.  It’s quite an honor to receive that thumbs-up.  He’s turning into quite the little thespian too.  In the evenings he likes to reenact The Cat in the Hat.  He gives Jeremy and I our roles. I always start out as Sally, Jonah as the brother and Jeremy as the fish.  Once the cat starts his antics, the roles change. Jonah plays the roles of: Cat, Thing 1 and Thing 2.  His favorite part is when Thing one and Thing two run around the house, trashing the place. Fortunately the cat always picks up his play things.  It’s hysterical.

We’re so lucky that Jonah is doing so well. He’s incredibly happy, Jeremy is on break from work now and Jonah couldn’t be more delighted, he relish’s in having us both home together. I wish it could be like this forever.

So May 4th the run day.  Jonny ran 50 miles it took him almost 13 hours.  It was a beautiful day, nice breeze.  Jeremy, Jonah and I drove around with Jonny’s wife and son, trying to find Jonny on the trail.  At the first check point of 27 miles, 5 hours into the run, Jonny told Michelle that he was hurting real bad. He tweeted: “It hurts worse then Satan’s migraine.” Yikes! It was pretty hard not to feel guilty. At the 47 mile mark, Jonny was still running, we said hello, he ate some fruit and kept running.  Meanwhile we enjoyed the mountain, the boys played for hours.  The parents laid on blankets and watched the boys kick the soccer ball around. It was about 6pm when Jonny crossed the finish line. It was tremendous. Jonny was in good spirits, he made it!  He raised $131,000 dollars. Jonny has recovered now and is already talking about running the New York Marathon for JJB in November.  He’s trying to figure out how he’s going to raise the remaining $30,000 of his $160,000 goal.

The fundraiser kept me busy with promoting, interviews and eBay sales.  We’re still selling Oakley sunglasses on eBay, Oakley donated a 100 pairs of sunglasses to the race!!  We have already raised 5,000 and we haven’t even sold half of them yet!  We’re only allowed to make $5,000 in a 30 day period.  So we have to wait a few more days before we can start listing again.  Timex has also donated 25 watches for us to sale too!  This will help close the gap on Jonny’s goal.

The CNN interview also aired on the 4th.  We didn’t get to see it live, we were up on the Mountain.  I do have a DVD of it now, we’re trying to figure out how to rip and burn it so that we can post to YouTube, we need a 14 year old to help us figure out how. The interview was nice, it was cut short because of all the Boston backlash.  CNN let me write a blog to make up for all that was cut from the interview.  Which was really great, the blog actually had more of an impact that the interview!  You can still read it and see the clip of our family from the interview.  Can you believe I wrote a blog for CNN?  Or that my family was even on CNN?  Or that Jonny and Lucy Liu put in a good word for us and helped us get the interview? Never in a million years......

May 4th also marked the 50th Anniversary since Dr. Sylvester Sanfilippo characterized the manifestations of the disease Sanfilippo to the American Pediatric Society.  But before we could honor this milestone, to our astonishment Dr. Sanfilippo passed away on May 2nd! RIP.

Next to raising $131,000 and appearing on CNN, my favorite part of May was this article.

I’m really very proud of this article, the author Lisa Jarvis did a magnificent job pulling it all together.  If anybody ever wondered what exactly it is that I: eat, sleep, breathe and dream 247 it is mentioned in this article.  If you have not read it yet.  You must stop reading my rambling blog and read this article. There I’m not even going to tell you about the other projects we’re working on this month. This is your homework assignment.

p.s. Many people have expressed their gratitude towards Jonny. Please tell him how you feel, put it in a thank you note, and mail it to:
Jonathan Miller
c/of Jonah’s Just Begun
PO BOX 150057
Brooklyn NY 11215

At the 47 mile mark, Jonah waves Jonny on.
At the finish line!

Jonah and his fiancee comparing their cool umbrella's.