Follow by Email

Thursday, December 8, 2016

OUR story began in the South of France.







OUR story began in the South of France. 

In January, five years ago Jeremy, Jonah, Elvis and I traveled to France to meet with Ghulian & Francine, Belen, Raquel & Antonio.  We had to go, besides the Burke girls and Levi these were the only MPSIIIC families that we knew of. Jeremy and I were desperate to find more families like ours, we aspired to build our patient population and hoped to work together to find a treatment for our children.  Our friends in France speak next to no English and Jeremy and I don’t speak any French or Spanish. Belen only speaks Spanish, but fortunately Raquel (Portuguese) speaks a little of everything.  Our friend Elvis came along as our French translator and camera guy. The parents embraced Elvis as family.  I hadn’t seen him for 5 years.

After Thanksgiving Jonah and I went to Paris to meet up with our families again.  Our network of French families has grown, expecting to meet with 4 French families this time; too much for Raquel to translate for.  I texted Elvis out of the blue. “We need you Elvis… can you go to Paris and London with Jonah and I next month?”  He responded a few minutes later: “I’ll make it work.”

Jeremy couldn’t get out of work. No matter who you are in the network television industry, taking the week after Thanksgiving off is gravely frowned upon.

Before I go any further I want to mention to those wondering if we travel to exotic places to hang out with our friends on JJB’s dime?  To that I answer NO, it comes out of our own pocket.

The French families made the arrangements and found us an awesome three story house with a finished basement.  Perfect for our crew.  I wish we were still altogether.  How we look out for each other, nobody has to apologize for their child’s behavior.  They are better then some blood family members,  they would never judge you for having a ‘naughty’ child. No matter how bad your kid is, it doesn’t phase them, they just help. The odd thing about Elvis is how he responds to our kids, it’s as if he has a beloved sibling with Sanfilippo. There is no reason for how awesome he is, he just is. I mention this because Elvis deserves recognition, like our kids, he’s 1 in a million. I have never met a calmer person that has reflexes as fast as Elvis, he doesn’t skip a beat. Even if he wasn’t in the room he knows what just happened and he translates the scene before I even ask him to. If he could respond right now, he’d remind me of how I yelled at him from the ground floor up two flights of stairs to come down.  When he came down, I told him it was time for him to get to work. The look on his face put me in my place and I think I stopped bossing him around after that.

Besides just being with each other our meetings are a chance to catch our families up on the science. This year we welcomed a recently diagnosed family, the parents of 4 year old Jewels.  Devastation clouded their faces, Jewels’s dad could hardly make eye contact with me.  Out of respect I tried not to catch his eye. His wife… she braced herself for the answers to every one of her questions.  They found Ghuilain and Francine after diagnosis, they did what we all did when our doctors had no answers, they found other parents. We were just planning our get together when they were diagnosed. So they found themselves sitting at a dinning room table, with strangers, their heads down afraid to ask the questions that they drove 6 hours to ask.  Four seasoned families starred at them waiting for them to gather the strength to talk.

Stopping for a moment now to remind you that we still need your help!  Our holiday giving campaign has been awesome so far, but I see that momentum has slowed down.  We really really really really really need to raise another $70,000 dollars. I was blown away by the $18,000 that we raised in one day, we exceeded our Giving Tuesday goal of $10,000 and an awesome person doubled our goal with $20,000.00!!  "Save Me from MPSIII" runs until the 4th of January.  Join our team, help promote or donate. https://www.crowdrise.com/save-me-from-mpsiii/fundraiser/jonahsjustbegunfound


They arrived the afternoon that we took the kids to Disneyland.  Francine and Ghulian waited for them at the house.  When we got home our motley crew burst in exhausted and exited from our day at the park.  I can imagine what they must be thinking… “How can they all be so happy, when their kids are dying.”


Our day at Disneyland had been a blast and I didn’t think to dial it down before I walked in the door.  I wish I had been more respectful of their state of mind.

Disneyland was so successful because we got the special need passes for Haitem and Jonah, the pass gave us the ability to cut to the front of the line. It was a huge hassle to get them, I was ready to give up, but Elvis wouldn’t let it go.  He told me he was going to lay it on thick.  I didn’t have documentation that Jonah was ill.  We had to prove it to them. The first line that we cut through was at least an hour long and made up for the process that it took to get us the pass. Plus I got in for free, Jonah was half price and three other people got to be on our pass!  Disney Paris was decked out in lights and Christmas scenes and special surprises were everywhere.  Watching out for Jonah was a bit scary at times.  He always has to be up front and despite the freezing weather the crowds were big.  I don’t know how we managed to keep us all together.


Obviously I live a very frazzled life, I have my fingers in a million pies, my brain is always preoccupied with something.  When we’re in a new and exciting public environment with Jonah we have to pay extra attention to him. Jonah gets over stimulated easily and when that happens all hell breaks loose.  When I know I’m going to be in one of these situations, I wear my fanny pack.  I can’t spend time digging in a book bag or purse trying to find my wallet.  I have to be ready to pay and bolt. Our families went to check out this huge Christmas fair, in the heart of Paris, up and down the street for a half mile on each side vendors lined the streets.  There were rides for the kids, an enchanted forrest delighted Jonah.  It was a very merry time. We walked and walked checking everything out.  Jonah really wanted to go on the little Christmas train ride. I promised him we would go back.  We stopped to buy some Christmas presents, there was a really cool soap stall.  I stopped to buy some things. Raquel was looking after Jonah by my side.  I just pointed and said I want that and that and that.  I noticed a man next to me and I apologized for cutting. He didn’t care, he started to chat me up, asking lots of questions.  He told me how much my order was and I thought that was weird. He was really tall, he towered over me, he watched my every move. I reached into my fanny pack and opened my wallet to pay, he did not take his eyes off of me.  He made me nervous but I shrugged it off, he wasn’t going to rip the wallet out of my hand in front of everyone.  I paid and we moved on. 

At the end of the boardwalk the families wanted to cross the street for something else.  Jonah was freaking out; he demanded that I take him back to the train. It was dark, we needed to be going home. We compromised and made a place and time to meet back.  Alone, Jonah and I ran all the way back to the train, weaving in and out of the crowds.  I grabbed some change out of my wallet and zipped my pack back up and covered it with my coat. Jonah got his ride everything was fine.  Then he announced that he really had to poop. Like a four year old he waits until the very last second to go.  So we started running again, Jonah kept stopping to look at things. I was stressed; afraid that he was going to poop his pants, afraid that our friends were standing waiting for us.  We finally found a bathroom, FYI you have to pay to use the toilets. Jonah rushed in while I went to pay.  Yup you guessed it, my wallet was gone. There was nothing I could do. The bathroom attendant didn’t care that I didn’t have the money or that I had just been ripped off. I knew immediately that I had been targeted. These guys work as a team, that man was hanging out at one of the most popular vendors waiting for someone like me.  I swear I couldn’t have made it any easier for them. 

As it all sunk in I started to cry, so many cards to cancel, I hadn’t paid for my train tickets or hotel room yet.  Then Jonah yelled: “Mom I have poop in my pants.” I went to check on him.  Not only did he poop in his pants but it was all over the floor.  Of course there wasn’t any toilet paper, I tried to pretend like everything was fine as I took toilet paper from the other stall. Trying to clean him up as best as I could.  Then he stepped in it and started yelling at me to clean his shoe. I hadn’t paid for him to use the bathroom and here he had shit all over the place. I laughed and cried all the way back to my friends. I had a good cry then let it go. I didn’t have our passports in my wallet and I had my friends to help me out.

That same morning, I had locked the entire group out of the house. Ghuilian left the key on the table along with his phone that had the landlords # in it. So what… We found a ladder, Raquel had left the window open upstairs. Antonio climbed up and let us back in. No harm done. What’s that saying… the last one out locks the door?

Three days with the families in Paris then off to London. We planned the trip around a conference that I was invited to attend.  But that’s enough for now. I tired myself out just thinking about our adventures in Paris. You won’t believe what happened in London. lol 

I'm thinking maybe Elvis should write the blog about London.  He's the one who spent three days alone with Jonah...