Follow by Email

Tuesday, April 23, 2013

Life is unpredictable and I wish I could just get used to it.


Life is unpredictable and I wish I could just get used to it.

At the beginning of the month Jonah and I spent some time in OR. Our first day of vacation we had a beautiful fundraiser, a Bunco party and silent auction.  Which was held at our friend Ila’s Tea Room.  Ila and my Mom set up an event that could rival any Martha Stewart benefit. I thoroughly enjoyed myself. The energy was great, everyone was happy to be there, good friends meeting up and catching up.  It was a wonderful experience Sue (Aimme’s Mom, MPSIIIC) and I addressed the room and informed everyone of the amazing progress that we have made since LY’s Bunco fundraiser.  We had the room in joyous tears.

Later that evening, Melissa and I went to an awesome wine tasting event 20+ wineries pouring. We worked the room tasting wines and networking for JJB’s wine tasting event.  It was a really nice evening enjoying a glass of wine on the porch overlooking the vineyards.  A great way to start off a vacation....

The next day I saw on Facebook that my friends daughter passed away in her sleep.  Mia, MPSIIIC was just 19, her death took everyone by surprise and rocked our Sanfilippo community.  Mia was a character and her mom (Kimberly) an expressive writer, Kimberly shared with us hysterical Mia stories on our MPS forum.  I always got a big kick out of Mia’s antics.  Most recently, she had taken her classmates homework and crossed out their name and replaced it with her’s and turned it in. A kid after my own heart.  When Jonah was first dx’d Mia’s Mom was very good to me, she talked to me with kid gloves.  She didn’t bombard me with the harsh realities, she made me feel like we could get through this. As hard as it is to acknowledge the reality of this disease, I take comfort knowing that Mia went peacefully.

When we got home our focus turned to Jonny Lee Miller’s ultramarthon.  I’m still in complete amazement over this mans generosity.  Like Jonah, he’s one of a kind. He’s bending over backwards to help us. I know how hard he works, Jeremy works next to him behind the camera.  They easily put in 50-60+ hours a week.  Jonny has been training in his spare time running several hours a day.  He did a four hour training run a few weekends ago in the pouring rain. The race takes place the week that Elementary wraps.  They just found out that they have to work the Friday before the race and back to work on Sunday.  They’re working Sunday because Saturday Jonny will be running  the 50 mile marathon for JJB.  Then they go back to work!  Part me is overwhelmed with guilt and disbelief  the other is just so thankful and relieved.

After it was to late to find corporate sponsorship, Jonny put out a letter to all of his friends and co-workers, letting them know about the race and Jonah.  Yesterday JJB’s PO BOX was filled with checks one of which was for $10,000, from one of the biggest celebrities in Hollywood.

The night before the Interview with the View, Jonny told Jeremy that he couldn’t sleep he got up in the middle of the night and went over his talking points. Check out the clip, notice how determined and direct Jonny is about getting the point across about the race and why he’s doing it. I was so proud of him and honored that he took the time to understand the science and talk so passionately about the cause. I was overtaken by how genuine he really is. http://youtu.be/ucnHTBJYPKU

On the East Coast the show was pre empted due to the Boston bombings. I’m going to refrain from commenting more on that day.  This month has been rife with sadness and anger. We have to try and find the bright side of life.  Otherwise we’re all doomed.

More good things to come. CNN is coming out from Atlanta tomorrow, Jonny got a couple hours off so he could interview with Dr. Sanjay Gupta the medical correspondent for CNN. The piece will be nice and robust. We get to tell our story and talk to the science, Jonny will tell why he got involved.  Seriously this is a dream come true, our chance for a full on interview with CNN, telling the world about Sanfilippo and the plight of the rare disease community. The kicker people will actually tune in because Jonny is bringing it to their attention. ha.  It will air the day of the race, May 4th.  So set your DVR’s.