Penn family find their inspiration

Until July 6, Will Penn was just like any other 8-year-old boy -- a spunky mischief maker who adored his big brother, Mitch, and whose biggest worry was playing well for his Little League baseball team.

What he didn't know, what no one knew, was that he wasn't like most other little boys. He was born with an arteriovenous malformation (AVM), a nasty cluster of arteries and veins jumbled together in his brain that were waiting to burst.

They chose July 6, igniting a massive brain hemorrhage and stroke in Will's tiny body. Before the night was out, Will underwent a craniotomy. Doctors removed part of his skull to alleviate pressure on his brain, tucking it behind his ribs for safekeeping until they could replace it six weeks later.

Will spent two weeks in a coma and the past nine months in various forms of rehab, relearning all the little accomplishments he'd achieved as a baby and toddler.

Since then he has progressed steadily, from a wheelchair to a cane to walking on his own, albeit with a decided limp.

Still, doctors have told Will's parents, Jennifer and Steve, that their son will live with some sort of limitations for the rest of his life, that a full recovery isn't possible.

Jennifer Penn has never accepted that prognosis; for months, her faith was based solely on a mother's instincts and devoted stubbornness.

Now she has something even stronger, even more tangible to believe in.
His name is Cory Weissman.

Weissman made news in February when the Gettysburg senior, once a 1,000-point scorer in high school, sunk a free throw in a Division III game less than three years after an AVM nearly cost him his life.

Through a network of friends, Weissman (who is still at Gettysburg) and the Penns (who live in Atlanta) have connected via email, the college student serving as a big buddy to Will and a source of inspiration for Will's parents.

"Cory gives me hope," Jennifer said. "I can see the future because of him. There's a fine line in complete faith that your child will have a 100 percent recovery, even though neurologists tell you there will be deficits. You don't grow new brain cells. Do I have hope? Yes, I do, but there's also Will saying, 'When I get better, when I use my left hand, when I, when I,' and you worry. Am I compromising? Am I giving up? Am I expecting too much? Cory gives me hope."

He had no idea. When that second of two free throws slipped through the net, Weissman figured that would be the end of his story. He took the game ball from his coach and went on his way.

And then all of a sudden, Frank Deford was talking about him on NPR, national media outlets wrote his story and ESPN ranked that made free throw as one of its top 10 "SportsCenter" plays of the night.

Weissman started getting emails from old people and young, scores who had suffered strokes and AVMs just like he did. He wrote back to all of them, to the dad who spoke about his heartbreak because he was no longer able to play catch with his son in the backyard, and to Will, the son of two athletes (Jennifer swam at North Carolina, and Steve was a member of the 1996 U.S. Olympic men's handball team) who were searching for some sort of hopeful beacon for their son.

Weissman told Will his personal story, but more, he offered him encouragement, writing, "BUT I NEVER doubted myself! You can't let these things beat you."

That same day, Will wrote back, signing his name, "Your new friend, Will Penn," with 47 exclamation points.

"You know the way it is, this happens and you get better to a degree, and people think about it every once in a while," Weissman said. "There's not a day that I don't think about my stroke because I don't walk normally anymore. I think about it every single step I take, but I also know that I'm happy and lucky to be where I am. I'm no superhero. I wasn't smiling and feeling triumphant every day. But if I can help people get through this, I feel like it's an obligation."

No one knows how much better you can get. They can only tell you what they think, but you can't listen to that. … That's what I told Will's mom -- just keep working because you never know.

-- Cory Weissman

It is not, however, just what Weissman says; it is also what he has done that helps.

Once the Penns knew their son would survive, there was another wave of grief -- a mourning for who they thought he might be and what they thought he could accomplish.

In their Caring Bridge journal, the Penns celebrate Will's first cough and the July 12 day that he squeezed his dad's hand. It is a heartbreaking and honest glimpse at their shifting dreams.

Since July, Will has made enormous strides, but there is so much left to do. His left hand remains paralyzed, and his vision severely impaired. Recently the Penns have lamented that their son's progress has plateaued.

But is that plateau permanent or temporary? Doctors can offer a prognosis, not a guarantee, and the brain, the Penns have learned, is truly a mystery.

And because Will is so young, his work ethic is different. He attends rehab regularly and willingly, but as a child, he doesn't grasp that he will get out of rehab what he puts into it.
"If it were you or me, we intellectually know that if we were told a bicep curl would help us, we'd do it until our arm fell off," Jennifer Penn said. "As a kid, he doesn't get that."

Which is where Weissman comes in.

He's not a mom or a dad or a grown-up. He's a cool college kid, someone who is telling Will he's great not because he has to be but because he believes it, because he once sat where Will sits. He knows that rehab is a drag because even today, Weissman is busy following his physical therapist's workouts three to four times a week.

But he also knows rehab works, so he gently, via email, prods and reminds Will to work hard.

Weissman is proof of what the doctors don't know -- just how much a body can recover and how long it can continue to improve. Just this week, Weissman sent videos to the Penn family, one of him running for the first time and one of him running now, a powerful display of his personal success.

"No one knows how much better you can get," Weissman said. "They can only tell you what they think, but you can't listen to that. When you're fully paralyzed, there's so much room to improve that at first, things come back so quickly. In rehab, one day I would move my index finger and the next I could curl my fingers. Then it slows down, but it doesn't mean it stops. No one knows. That's what I told Will's mom -- just keep working because you never know."

Getting Will Penn on the road to recovery is a full-time job.

Between various rehab appointments and personal training sessions, he averages close to a dozen appointments per week.

About a week ago, Weissman emailed the Penns and told them that he had been working with an acupuncturist and was convinced it had helped jump-start the new movement in his left ankle.

He wasn't the first to mention acupuncture as an alternative therapy. In fact, Jennifer Penn had heard from more than a few people that it can only help, not hurt, Will.

She mentioned Weissman's suggestion in passing to Will but privately thought to herself, "When in the heck am I going to sneak in an appointment for acupuncture?"

And then the other day Will stopped her.
"Hey, Mom," he said. "When am I going to get acupuncture?"
"And I thought to myself," Jennifer Penn said. "Two and a half years later, and Cory is still making progress? I need to make an appointment."