When Henry was born, both of his legs were paralyzed. The tumor in his spine had compressed his spinal cord and his legs basically got stuck in the womb in unnatural positions. His left foot rested up by his left ear. And his right leg was pulled far across his body. The day after Henry was born, he was fitted with a hip brace to reposition his legs. Over the next months, Henry regained the use of his right leg but his left leg remained paralyzed from the knee down. Soon he was fitted for more braces, one for each leg, and he began physical therapy and electric nerve stimulation. When Henry was 2, he started using a walker.
We met Henry’s orthopedic surgeon, Dr. James Kasser, when Henry was one day old. And he’s been with Henry through multiple surgeries on both of his legs. Dr. Kasser has also been one of Henry’s biggest cheerleaders. As Henry grew and tested the limits of his mobility, Dr. Kasser was there. Learning to snowboard? Dr. Kasser was thrilled. Mountain biking? Amazing. Lacrosse… let’s get you a carbon fiber brace that’s lighter and more flexible. When Henry wanted to get back on the slopes shortly after one surgery, Dr. Kasser laughed. He was never fazed.
When Henry went off to Wake Forest University last fall and proceeded to break three leg braces in quick succession (hiking, volleyball and who knows what), Dr. Kasser dashed off new prescriptions and Henry was back in business with a new brace. So maybe it’s fitting that as Henry ventured off to college, that it was time for Dr. Kasser to ease into retirement from attending patients. Seeing Dr. Kasser for one last visit this spring was emotional for everyone. He’s rebuilt Henry’s legs multiple times, giving him the best chance to live life the way Henry wants to. Which is always at full volume.
And now Henry is 20!
It won’t come as a surprise to learn that Henry jumped right into activities at Wake Forest University. He pledged a fraternity where he’s tapped to be a Recruitment chair for the upcoming year. And he earned a spot on the campus committee that plans the University’s big fundraiser - Wake and Shake. It’s a 24-hour dance-a-thon to raise money for cancer research.
Henry was asked to be the closing speaker at the event, which raised over $320,000. He was The Student Champion. Henry stood in front of a packed dance hall shortly before midnight and spoke to the crowd, sharing his life’s story. (Josh and I watched the remote feed and you can too but the audio quality isn’t great. He begins around 11:11:40.)
He shared his speech with us beforehand and we were a little shocked at how much he wanted to say in public about his experience with cancer and what it has done to him and his body. Maybe we were just being protective, not wanting him to put something out there to this new community only to find some people might judge him. But Henry wouldn’t change a word. He spoke about the damage the tumor did to his spinal cord and internal organs, the rounds of chemo, the surgeries, and years-long dental reconstruction. But his takeaway was how lucky he is to have had incredible care and access to the best doctors and medicines. Henry told his classmates and professors that the money being raised wasn’t for some far off place or future program. It was to help people just like him. A kid who wants to snowboard and ride his bike and go off to study at college. Live life at full volume.
On August 2-3rd, Henry, his brother Leo and dad Josh will ride the Pan Mass Challenge. A 200 mile bike route across Massachusetts. Since we started our team, we’ve raised over ONE MILLION dollars. Every single dollar raised goes directly to cancer care and research. This year, we’re again riding for our pedal partner Paige! Paige is a spunky 7-year old from Maine who is battling high risk Neuroblastoma, the same cancer Henry had. She's currently undergoing immunotherapy with the same doctor who treated Henry.
This past year, we’ve lost family and friends to cancer. Most recently, Uncle Sheldon who, much like Henry, had a desire to live life to the fullest. And we know many of you have been directly affected by cancer. You’ve had your own diagnosis, or helped a family member or friend navigate the disease. To say it’s not fair is an understatement. And we can’t change that, but we can decide how we respond.
We hope you’ll join us in supporting our PMC ride.
Donote securely online, or you can send a check made out to the PMC to:
The Fenollosas
12 Benjamin Road
Arlington, MA 02476
(100% of your donation is tax deductible and our 3 Fenny riders will be sharing fundraising)
Lastly, a note from Henry… “The Pan-Mass Challenge is more than just an event—it’s a reminder of why we fight. It’s proof that when a community comes together, we can make life changing differences in the lives of people battling cancer. I am living proof of that difference. The funds we raise don’t just get tossed away into meaningless labs or research papers; they go into giving kids like me a future.”
Henry is living proof of what your generous contributions can do. 20 years ago we wondered how Henry was going to manage in the world - a little kid with two leg braces and a walker. Now we’re just trying to keep up with him.
With love and gratitude,
Cath, Josh, Henry, Leo and Ruby Fenollosa
www.irideforhenry.com
