Meeting Others Like Tess

We've been waiting for almost Tess's entire life to meet someone like her, to meet a family like ours. And it finally happened.  

Tess's disease is rare. Ultra rare. How rare? She was the eighth known case in the world. Since then we've found a few more people with a USP7 mutation, but it's still a verrrrry uncommon affliction. This is the first post in a three-part series about our recent trip to the USP7 conference, to meet other families and the genetics team at Baylor who's been working on her gene.    

We're up at 3:30am. Flying to Houston, Texas. Taking Tess and Dana. It's something we've waited almost seven years to do. We are headed to the very first family conference for USP7. If you've been reading this blog for a while, you know that USP7 is a gene. And that in our Tess, that gene has a mutation. We think--but haven't been able to confirm--that the mutation in that USP7 gene is the cause of her disease. The cause of her delays and everything. 

By the way, did you know that flight attendants are able to unlock the airplane bathroom from outside? Yep, they can. Turns out. So there I am, taking Tess to the potty, high in the friendly skies, and when she's done, I need to go. I maneuver her into position behind me, and--you've seen these bathrooms. Not large. Not large enough. She's pinned behind me, and I'm sort of cantilevered outward toward the wall, leaning way over. And while I'm going, she starts pounding on the door. Hard. Within a second, before I realize what's happening, someone outside goes, "Can you get out?" and immediately they unlock and start to open the door. Yeah. Awk-ward. Not my favorite moment of the weekend. 

But anyway, the reason we're heading to Texas is there's a guy at Baylor College of Medicine in Houston. German doctor named Christian Schaaf. He studies the USP7 gene. The story of how we found Christian is pretty awesome. If you haven't read it, you ought to:  click here to read it.

Christian and his team have agreed to host us for a weekend. There are 21 confirmed cases worldwide of the USP7 mutation. Twenty-one. Of those cases, a third--seven families--are coming. From across three countries and five states. None of us have ever met each other before, except through the occasional Skype video call. Never in person. 

And here's what that feels like. We arrive at the hotel. We meet Olivier and Stephanie. They're French. They've come from France. They've brought their daughter Zoe. Zoe and Tess are craaazy similar. Zoe's a few years younger, but otherwise they could be sisters. When Tess was 3 or 4, she looked and acted exactly the way Zoe does. For this reason, we feel an especially strong connection with this French family. We have been counting the days before this meeting. 

And now that it's happening, it is extraordinary how, after months of waiting to meet, when it actually happens there is shockingly nothing that can be said. Nor does it need to be. There is a profound connection, a way of seeing each other that requires no remarks, no explanation. We stand and see each other in this fashion for what feels like a long time, but is probably only a few seconds. 

Zoe, like Tess, has an older brother. His name is Tom. He and Dana become fast friends, in spite of neither of them speaking the other's language. There's another language that the two of them speak, after all, one that I don't speak and my wife doesn't, and neither do Tom's parents. It's the language of their unique club, of having a sibling who has this USP7 disorder. They are both fluent, since they've been speaking that language for years now. 

Later that night we are out at a barbecue place. We've been joined by another family, who came from Florida. We are eating ribs and drinking cold beers from bottles that come in a bucket. It is such an American meal. The French are on their first trip to the states. While the kids play and run around, we sit, with Tess and Zoe on our laps. Our heads are exploding, we adults. Sure, we're laughing and having a good time, but we are also reeling. Reeling from the sheer fact that there is no screen between us, no ongoing Skype call. There is no land or sea between us. We are in the same place. There are plates of ribs and beer bottles and huge Texas cars pulling in and out of the parking lot of the barbecue place, but there are things we can't see--everybody's cells and genes--and in all of our minds is the USP7 gene, and the fact that in one place are now purposely gathered more kids with a USP7 anomaly than ever before in the history of the world. 

We meet the other families in time. More than once, someone remarks how easy this is. How there's no judgment, how, when Tess has an accident in our rental car, there's no need to explain or apologize or feel anything at all. It's just what happens. This group is so wonderful to be with. Sure, we're still reeling from it all but there is such comfort at the same time. I had imagined that we'd pick each other's brains about therapies, different communication methods that have worked, whatever we've done that's been helpful. And there was some of that, for sure. But honestly, most of the time, we were all content to just be. 

The next day we meet Christian Schaaf. He's the head genetics doc who's working on this gene. He's a tall, slim German man whose English is flawless. Within seconds of meeting us, he is holding Tess's hand. Later during our clinic visit he holds and makes quite a fuss of her. 

We meet Mike Fountain in person. He's the guy who emailed me. The first person we ever heard from at Baylor. The one who found my blog post and got on the phone with us and told us I know of other patients. Meeting Mike is emotional for me. We've talked through some of the most intense moments of my life. I feel like John McClane at the end of Die Hard, when he finally meets Al face to face. 

As the weekend goes on, it is clear. Later, one of us will tell the others how quickly strangers can feel like family. We are connected now, in a way that can't be undone. We all feel at last as though pieces are sliding into place. Into spaces that have been lacking for such a long time. It's something we've wanted to feel since Tess was about six months old, since the moment we sensed something was wrong. It's the feeling of belonging.