Despite being diagnosed with neurofibromatosis (NF) as a baby, Penny Doerge didn't let the disease hold her back. Scan any of the photos here or at Penny's Flight on Instagram and you'll see that, even with her leg brace and multiple surgeries, she did ballet and danced with friends, leapt fearlessly into the ocean, and twisted herself into single-leg and upside-down yoga poses that would give some adults pause. Now a program that bears her name at New York's Hospital for Special Surgery (HSS)—where Penny was a patient—is letting other children with disabilities do the same: live life with no holds barred.
 
The Penny Doerge Adaptive Academy (PDAA), which was founded in 2014 and renamed in her honor last year, is one of the core initiatives Penny's Flight supports, along with funding research for NF. The group organizes activities—such as rock climbing, tennis, and surfing—for children and teens suffering from a wide range of musculoskeletal conditions, including cerebral palsy, limb amputation, rheumatic diseases, and NF. All events are free to HSS patients and accompanied by trained guides and volunteers from the hospital staff (nurses, orthopedic surgeons, and rehab therapists). “Penny's resiliency, positivity and courageousness are all qualities that the Academy works to promote in its participants,” says Kate Doerge, Penny's mom and Penny's Flight co-founder.
 
Here, we talk to four families about the immeasurable impact of the program. "We are grateful," says Barbara Eliaas, a PDAA parent. "The difference it made in my daughter's life is priceless."

Madison's greatest challenges?

Mother Ravonne McCray: Making her life feel normal, and boosting her confidence. She used to avoid the park because other kids would stare, so encouraging her to join in was difficult, but we've mostly overcome it. My challenges are making sure she is getting the appropriate medical care and finding educational settings where she gets the necessary support and accommodations.

What has Madison done with PDAA?

RM: So much—surfing, skiing, basketball, soccer, rock climbing, tennis, and water skiing. Participating in these events has improved her confidence and helped her realize that, despite her disability, she can take part in different sports.

Before the program vs. after the program...

RM: Before joining the program, Madison was an outgoing young lady but somewhat hesitant to try new things. Seeing other kids like her participate in PDAA events has made her excited to do so. This academy has truly broadened her horizons.

Alex's greatest challenges?

Mother Magdalena Nowakowski: Alex walks with a walker or cane and wears orthotics on his legs. Keeping up with his siblings—he has a twin brother and a younger sister—could be a challenge, but that has never stopped him from enjoying his life to the fullest. He is an awesome kid—funny, smart, outgoing, and very much an overachiever! He is this wise old soul living in a young boy’s body.

How has PDAA helped?

MN: Having a child with a physical disability, who has siblings that are perfectly fine and can participate in any sports, can be tricky. But that was never the case for us since PDAA opened up a whole new world of experiences for Alex. He has done surfing, water skiing, rock climbing, a soccer clinic, and a basketball clinic with the Nets. We met the Rockettes! The fact that Alex was able to go skiing seven months after two major surgeries proves that HSS, together with PDAA, provide nothing but the best care!

Without the Penny Doerge Adaptive Academy...

MN: Life wouldn't be the same! The experiences, the memories, the fantastic coaches and volunteers, and all the unforgettable adventures put the biggest smile on Alex's face and makes our hearts happy!

Heyley's greatest challenges?

Father Ken Urban: Her grueling schedule to help her develop, strengthen, and train her body and mind to do the things she wants to do. She is a determined young lady with a “no-quit” attitude who has multiple therapies weekly, including PT, OT, speech, counseling, and a social-skills class. On top of that she takes weekly equestrian and seasonal ice-skating and swimming lessons to help develop her coordination and core strength. She does this while maintaining excellent grades in school as an honor student.

What has Heyley done with PDAA?

KU: Skied, gone indoor skydiving, and played basketball with both the Long Island Nets and the Brooklyn Nets. She was also able to practice her soccer skills with the New York Red Bulls. This event helped Heyley get over her fear of playing soccer and getting knocked down because of her orthopedic impairment. 

Before the program vs. after the program...

KU: Heyley has always been determined, but PDAA has opened her eyes as well as ours to new skills and interests while providing a fun atmosphere to socialize with other children with disabilities. It allows her to step outside her comfort zone and be in a safe space where she doesn’t feel like she’s being judged, allowing her to enjoy the activity and the camaraderie. We have seen incredible growth when it comes to her self-esteem and overall self-confidence too.

Your greatest challenges?

EGE: I sign up for sports with my peers at school and, while we all start as beginners, over time their skills improve way faster. This often hinders the team spirit. Just a couple of days ago we played volleyball as a warm-up in PE. We stood in a circle and one kid picked up the ball and went to form another circle; everyone but another girl followed. She does not have any disability, but we both stood there, left behind. While it hurt, I wasn’t going to cry. That’s not what I do.

What have you done with PDAA?

EGE: Basketball, soccer, and climbing, which taught me how to control my legs, shift my weight and balance, among other things. Skydiving made me engage my core muscles and pelvic tilt, which is a recently learned skill from PT. Waterskiing, sailing, surfing... There’s nothing new I wouldn’t try. Before, I automatically thought, “Stay in my lane—those sports aren’t for me.” But I don’t think this way anymore.

Without the Penny Doerge Adaptive Academy...

EGE: I would not have found my confidence, which I remember having as a small child back when I was only surrounded by my family. I gradually lost it in the broader world. I not only regained that confidence, but it's stronger.

From now to the end of June, we will donate a portion of proceeds from every single veronicabeard.com/en-pk order to Penny's Flight Foundation. Keep an eye on the VB Edit to see more of the inspiring ways people are "spreading wings" with Penny's Flight—and learn how you can get involved.