Tuesday, May 23, 2017

Riding For Derek

 As TigerBlog pulled into the parking lot at Penn Park Saturday morning at 6:15, he knew one of his two thoughts would have to be true:

Either he was about to be part of something pretty special, or he was about to be the victim of the best practical joke ever played on him.

As it turned out, it was the first. He would have been really pissed off had it been the second - though he would have had a certain level of grudging respect for Steve DiGregorio had he actually gone the practical joke route.

Instead, DiGregorio - "Digger," to everyone - will have to settle for TB's usual respect for the way that he, his family and his closest friends continue to attack a disease called ataxia telangiectasia that came into the DiGregorio family what seems like forever ago, when it went after Steve and Nadia DiGregorio's middle child, Derek. If the disease - A-T, it's known as - thought it was going to have an easy time of it, well, it picked the wrong group to mess with.

A-T is a rare disease, with around 700 cases in the entire country. It's a neurological disease that attacks the entire body and eventually causes the immune system to fail. It has a 100% mortality rate.

So what did the DiGregorio's do?

They set out to find a cure. And to do that, they needed to raise money. And that's what they've done. They've counterattacked A-T, raising hundreds of thousands of dollars through various means, all to go after a disease that nobody has ever heard of before Digger talks to them about it.

The latest effort was to enter a team in the "Million Dollar Bike Ride," an event that started at Penn Park and brought together about 300 riders or so, all competing on different teams that represented various "orphan" diseases. They were all there for the same reason - to support the DiGregorio's and all the other families who have been forced to deal with these hideous situations.

Digger, at one time a Princeton assistant football coach, is the kind of person who can get others to not think twice about helping in any way possible. In this case, it would be riding a bicycle. Or would it?

Maybe Digger was being devious. Maybe he was just trying to get TigerBlog to show up at Penn Park at 6:15 on his Saturday just to be funny. Maybe there would be no ride.

TigerBlog's alarm was set for 5:00, but he woke up shortly before that. It's something that seems to happen all the time when he has to get up super early. Set the alarm. Wake up just before it would have gone off. On the other hand, if he didn't set it, he'd sleep hours past when he was supposed to get up.

Riders could go either 73, 34 or 13 miles. TigerBlog chose 73 - he would drive 30 miles to Philadelphia, ride 13 and then drive the 30 miles back.

Actually, it was while he was driving down 95 that he considered - briefly - what a great prank this might be. When he turned into the parking lot, though, he saw bicycles and riders everywhere.

It was an interesting moment. TB didn't realize the scope of the event, but here were all these people, on their Saturday early, early morning, all ready to ride to help someone.

Digger and his son Zack, a Penn senior-to-be, pulled in shortly after TB did. He told them his thought that all this might have been a joke, and they laughed. That's what they do. They laugh. They have fun. And they fight on.

The A-T group included, among others, Princeton head men's basketball coach Mitch Henderson and former player and assistant coach Howard Levy, who is very close to Digger and who has been as much a driving force behind this fight as anyone. It was Howard who pointed out that there was a "morbid competition" between the diseases.

It was cloudy and cool Saturday when the ride began. It went up the Drexel campus and then over to the art museum and Fairmount Park.

For the most part, this was friends out for a ride. TigerBlog rode with Digger and joked about the things they always joke about - until Digger left him behind. Mitch and Howard, talking Ivy League basketball, came up behind him for awhile, but eventually TigerBlog rode on alone as they sped ahead too. It's probably TigerBlog's bike, right? It has to be one of the slow ones.

At about the halfway point, there was a rest stop, where his team all stopped. TigerBlog figured he'd keep going, since he wasn't tired and since it would give him a head start on them on the way back.

As he turned back towards the art museum, he began to pedal with a woman who introduced herself as Staci, a doctor who works in genetics. Though she was on another team in the race, she knew all about A-T, knew what an awful diagnosis it is.

At one point, it began to drizzle. TigerBlog remarked that it felt good. Then it rained a little harder. Then it poured. Then it poured harder. It was soaking. And refreshing. But mostly soaking.

Eventually Digger, Howard, Mitch and the rest of the group caught up to TigerBlog. At the end, it was up the ramp and back across the river, eventually back to the parking lot. And then inside Penn's ice rink, the staging area for the event.

There were snacks and drinks. And a get-together for the riders. Staci made her way in, and TigerBlog introduced her to Digger and Howard. Digger told her some of Derek's story. This is her world. She listens to these stories all the time, TB supposed. Her instinct as a doctor is to cure. TigerBlog figures all doctors feel that way.

Then reality comes and slaps you in the face. These diseases, the "orphans," have no cure.

While this was going on, Derek himself was a few blocks away, in CHOP. That's Children's Hospital of Philadelphia, a place where Derek and his family have spent far too much time. This time, he was there fighting off an infection, one that came along as he was finishing up high school and getting ready for things like the prom and graduation.

Instead, he was in the hospital again.

It was a stark contrast to the riders, out on what would be a rainy Saturday pedaling through Philadelphia, but it was also a sharp reminder as to why they were doing it.

For Derek. And the others like him. And their families, who deal with these diseases every day. And the Staci's of the world, who are all in on the race to help them, and not just on a bicycle.

The DiGregorio's are among the strongest people TB has ever met. When they said to be in Philadelphia around sunrise on a Saturday, TigerBlog was there. So where all the others.

It was a very special way to spend the morning. And it was no practical joke. No joke at all really.

There were a lot of laughs and it was a lot of fun.

The "orphans," though, hung over the entire day. And over at CHOP was a more vivid reminder, one that was more drenching than the rains that fell.

Derek, by the way, came home Sunday night. The fight continues.

So do the fighters.

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