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Wednesday, July 8, 2015

Game On!



The 26th was Jonah’s last day of first grade!!  This milestone is a reminder to us that Jonah is getting older and we still don’t have a treatment to halt the disease.  Believe it or not on his last day, I wasn’t overcome by fear, depression and panic.  Jeremy and I are both very much aware of what we’re facing and despite that we were happy.  Happy for ourselves and very proud of Jonah. Jonah is beating his fate.  Ok so he failed every subject, but he’s still actively learning!  Jonah appears to be getting better rather then worse.  His health is better, his behavior is much better, he shows a great interest in math and reading but hates writing.  He’s a social butterfly.  Five years ago when we received the diagnosis, we were informed that Jonah would have profound brain damage by the age of 7.




On Thursday, Jonah and I were at the playground until the sun went down.  Jonah had hooked up with a couple of school mates and the three of them joined in on another families game.  I had never seen these kids before, the dad was teaching them the rules to a hand ball game. All the kids but Jonah listened intently to the instructions.  Jonah stood back and picked his fingers staring off into space.  I wish I knew where his mind goes when he does that. When the game began, Jonah eagerly awaited his turn.  Not knowing what it was he was supposed to do, he fumbled through his play.  The dad patiently walked Jonah through the rules again. Yes!  Go stranger dad!

The new families mom showed up, I knew the women but couldn’t place her.  She sat down next to me and asked how we were doing.  Her shirt had the logo of Jonah’s camp on it and I remembered, who she was.  She said: “I hear Jonah is coming to camp again next year?!” 

My stomach cringed, this is the lady that had a sit down with me about Jonah’s behavior, last summer.  I wanted to run and hide.   Jonah had had a couple of really bad temper tantrums at camp, that threw everyone off their game.  I braced myself for an awkward conversation.

She surprised me by saying that she pulled Jonah’s camp leader from last year and brought him up to the older kids camp so that he could be with Jonah again.  I just about burst into tears, I was so grateful, not everyone gets it-she did.

In Jonah’s defense, the temper tantrum that really rocked their world was at Adventurer Land.  My bad, when I saw on their schedule  that they were going to Adventurer Land, I didn’t know what it was and I didn’t look it up (lesson learned). After the ‘episode’ Jeremy and I went there with Jonah.  When we saw the place, we shook our heads... Oh man- this is crack central for Jonah.  A mini amusement park for little kids. Jonah of course did not want to leave the amusement park, it was time to go, they were on a schedule and Jonah had gone boneless on them.  They can’t physically pick a child up and throw them into the bus (as I would have.)  Everyone there would have whipped out their Iphones and recorded the event. They had to wait out Jonah’s temper tantrum.

Jonah is going to rock this year at camp!  I’m not even slightly nervous about it.  Last year I worried all day, I jumped when the phone rang.  Assuming the worst.  I doubt I’ll get any calls this summer.

The director commented that Jonah looked healthy and happy.

Jonah is progressing forward, we see no signs of regression. Why? Why, is Jonah doing so well?!  We don’t know exactly and we will probably never know.  Maybe the ‘novel’ mutation that Jeremy passed on is doing something that we don’t understand.  Jeremy’s mutation has never been reported before.  That isn’t as esoteric as it sounds, the ability to identify these mutations is a new technology.  The mutation that I passed onto Jonah is well documented and is considered mild.  Maybe the genistein is helping.... Most certainly Jonah’s early diagnosis has played an integral role in Jonah’s case.  When Jonah was first diagnosed one of our geneticists said: “Jill, Jeremy, do you think you can tread water for awhile?”

We’re still treading water, but we can now see land. Our first treatment (gene therapy) is $750,000 away from going to trial.  The faster we can raise the capital the faster Jonah will get his ‘forever fix.’  At this point money is the only thing standing in our way.

JJB and South Slope Pediatrics are in fundraiser mania mode right now!  Seems that everyone is out of town, but we’re committed to pulling off the coolest gig at LeFrak that anyone has yet to have seen.  Get your tickets now! PURCHASE TICKETS NOW The first person to purchase four tickets to the event will receive four complimentary tickets.  Just write in the subject line:  “heard it in Jill’s blog.”  Disclaimer:  you must be the first person to make that purchase!  We will be in contact to get the names of your four guests. If you try but don’t succeed to be the first person, we’ll let you know and give you a big ‘thanks for trying hug’ on the day of the event. Good luck!