“I was scared,” the Sandy Springs resident said. “I didn’t know what was happening.”
Will, now 9, was having a stroke.
“Dana [our nanny] called Steve, my husband, and thank God he answered the phone,” Will’s mother Jennifer said. “Steve walked in and he knew he had a stroke. He could just tell by the look on Will’s face, he tried to lift his arms and he couldn’t and he was having trouble speaking.”
He was rushed to the hospital and had a cat scan, which clearly showed his brain bleeding.
The next course of action was an immediate craniotomy conducted by Dr. William Boydston of Children’s Healthcare of Atlanta at Scottish Rite in Sandy Springs.
After putting Will into a medically induced coma for about a week and keeping him in the hospital for nearly seven weeks, doctors figured out he has an AVM, an arteriovenous malformation, which Jennifer described as a “nasty little nest of veins.”
Will was blind for a week and a half after he came out of the coma and he had to learn how to swallow again.
Jennifer said part of Will’s skull was removed and stored under his ribcage “to keep it alive and living with the body.”
“It was off for about six and a half weeks,” she said. “They put it on right before he came home.”
Since Will bled from the right side of his brain and woke up paralyzed on his left side of the body, he is working on developing strength there.
“Will has a pretty pronounced limp and a little aid [called the Bioness L300] to help him walk on his left leg,” Jennifer said.
She said the next goal is for Will to run again.
“I don’t want to say never. The sky is the limit,” Jennifer said. “In terms of your recovery, I think it’s all in your attitude.”
Jennifer and Steve moved from Washington and Colorado Springs, Colo., respectively, to Atlanta for the 1996 Olympics, where Steve played on the U.S. handball team. She was also a competitive swimmer at the University of North Carolina in Chapel Hill.
“There is a lot of athleticism in this family, but Will is the one out of all of us who is hands down the most gifted athlete,” she said. “For us, that’s probably been one of that hardest things is dealing with that.”
Personality-wise, Will is the same boy she knew before that day, Jennifer said.
“The right side of the brain manages organization and planning skills. … This injury basically gives you ADD,” Jennifer said.
Nonetheless, he went back to Our Lady of the Assumption School in Brookhaven in November and will be in fourth grade this year.
In September, Will’s AVM was treated with a gamma knife surgery, which is a “massive dose of radiation that lasts six hours,” in an attempt to get rid of it, according to Jennifer.
He will have scans this week on his brain to see if it is gone for good.
“It’s supposed to go away between a year [and] two years after the stroke,” Jennifer said. “There’s still a risk of bleeding until it’s gone.”
Despite the Penns’ hardship, Jennifer said faith, a positive attitude and tight-knit support group helps them to get through Will’s recovery in high spirits.
Since she works a full-time job, Jennifer said her neighbors and friends are her “army of angels” because they help with taking Will his weekly appointments.
“It’s just a patchwork quilt,” she said. “We have friends who starting setting up a trust foundation the second day of his injury called ‘Friends of Will Penn.’”
Jennifer said the combination of the foundation and a fundraiser in April, which raised $60,000, allows them to afford certain high-technology recovery tools insurance would not cover.
“We’re a family who has some resources who can do those things but not everyone has that,” Jennifer said. “My vision for Friends of Will Penn long-term is to help brain injury families. I want to help them with technology that will help them in daily lives and in recovery.”