2025 Take Steps Honored Family: The Levy Family

“Managing this disease is not a linear process…. You will have setbacks; you will have breakthroughs; you will have flare-ups for no obvious reason; and you will have periods of excellent health during which you almost can’t remember being sick at all. But I promise you that you will be ok.”

David Levy is no stranger to Crohn's disease or ulcerative colitis.  Not only is he a hero to his daughter, Soleil, in the battle of IBD – but he was diagnosed himself at just age twelve.

The Levy family has been an integral part of the Crohn’s & Colitis Foundation’s community, embodying the spirit of dedication and compassion that drives our mission. From dancing the night away at the Gala for Crohn’s & Colitis to supporting IBD research through donations and advocacy to being a large part of New England Take Steps, David, Rachel, Soleil, and her older brother Aden exemplify what it means to be true champions of our cause.

“The Foundation has been a remarkable way to connect.” Says Mom, Rachel. “Through the Foundation, I feel that we have the world’s best resources at our fingertips, and I am so thankful for that.”

Rachel has been a long-time caregiver of IBD, having supported multiple family members, including her husband David, in navigating the obstacles of the disease. However, when her daughter, Soleil, was diagnosed, life changed for Rachel. 

Being a parent myself of a child with IBD, I understand what Rachel felt. This disease brings its share of challenging days—moments where finding even a thread of strength seems impossible. But in the very next moment, you see where that strength comes from. It shines through the courage of the loved one you’re supporting. Their resilience and tenacity ignite a strength within you, reminding you why you stand by them and continue to fight together.

“My husband David told me early on that he tried to live a life where his ulcerative colitis doesn’t define him. While I hope that Crohn’s disease doesn’t define Soleil, I do hope that these early lessons give her strength and confidence to be her strongest advocate in the world.”

Diagnosed at age six, Soleil learned at an early age to listen to her body and the importance of self-advocacy. 

“I’ve learned to stand up for myself, that I can do hard things and bounce back from the hard stuff, and also how to ask for help.” 

Now nine years old, Soleil finds solace in horseback riding, a passion that helps her navigate the challenges she faces. With remarkable determination, she works hard to maintain a healthy lifestyle, takes her medication, and stays actively involved in the Foundation. Through the Foundation, Soleil has been able to connect with other children living with Crohn's disease and ulcerative colitis, fostering a sense of belonging and hope. Her involvement has strengthened her faith that there are compassionate people working together toward a shared mission.

“I hope that Take Steps can raise tons of money… to raise awareness of IBD and how to accommodate people with IBD.”  - David Levy

“I hope that when Soleil takes the stage at Take Steps, she looks out and sees and feels a sea of support and love and encouragement.”  - Rachel Levy

“I hope Take Steps will raise a lot of money to give money to the scientists so they can make a medicine that can help with Crohn’s & Colitis.”  - Soleil Levy

Join New England Take Steps to support the Levy Family and countless others living with IBD. 

For me, the memory of my first walk remains unforgettable. The sense of community and unwavering commitment within the Crohn’s and Colitis family is unparalleled. Being a part of this community doesn’t just make a difference; it fills your heart. 

Let's Take Steps on June 7, 2025 at North Point Park toward a brighter future for everyone impacted by this disease. Register for New England Take Steps here.