#VBGIVESBACKPenny’s Flight Foundation
What inspired you to turn your grief into purpose and launch Penny’s Flight?
It goes back to advice my father once gave me and my husband: how you decide to play the cards you’re dealt in life is up to you. So when we learned that Penny had neurofibromatosis, we had a choice about how she was going to live her life. We chose positivity. When Penny passed, we chose to celebrate her life and continue her legacy.
Tell us about Penny…
Penny radiated sunshine from the minute she was born. She never complained no matter what she was going through—and she had 14 different surgeries. She truly was this little warrior who got through it all with the biggest smile.
What’s the mission behind Penny’s Flight?
In addition to expanding knowledge and research around NF, the pillars of Penny’s Flight are really the pillars of Penny’s life: beauty in imperfection, positivity in the face of challenge and faith over fear.
In every step of her life, she chose positivity. She bedazzled her braces. She was the first one to climb up a mountain on a girls’ trip. She and her friends started a summer program for young girls, Glam Camp. No one realized that during all this time, she was doing daily trips into New York City for radiation. Her attitude was "I can and I will."
How will the donations help?
The money we raise will fund grants to help researchers with drug development and clinical care, gene therapy and improvements in patient care. NF affects far too many people. We can help shine a light and find a cure.
What should parents know about NF?
The complexity of NF is that it manifests differently depending on the person, even among siblings. We don’t have any way of predicting who will develop which features or how severe they will be. You could have anything from freckling in the armpits or groin to small benign tumors to tumors on the optic nerve that cause blindness to glioblastoma, the brain tumor that took Penny’s life. There currently is no cure. But that’s why we’re doing this—to spread awareness and raise the critical funds needed for research.
Advice to parents—or anyone, really—dealing with loss?
Going back to my father’s advice, we all have a choice in how we live every day. Are we going to choose the high road or are we going to be depressed? Penny lived more in her 16 years of life than people do in a 100. We recognize that’s a gift, inspiring us to live life in the biggest way. It’s your wingspan, not your life span, that matters.
Greatest lesson you've learned from Penny?
It goes back to living life to the fullest—and to live it with beauty, kindness, bravery, humor and resilience.