Remy Levine

Even on the harder days, knowing how loved Remy is brings strength and peace. And joy still fills Remy’s life in ways that matter most, be it the simple moments, mindful time together, a walk down the street to the park, or the excitement of a classroom.

With her gorgeous curls and bright spirit, Remy is one of those children who immediately lights up a room. From ABBA and Pitbull to the songs from Moana, Encanto, and Hamilton, music fills her world. If there is music, Remy will find it! School is another source of happiness for her, offering the chance to learn and connect with others. She loves being with and hearing the other kids around her, soaking in the energy and voices of her peers. Whether she’s cuddling with her cats or snuggling with something soft, Remy finds comfort and delight in life’s simplest pleasures.

Her mom, Natalie Sheppard, describes life as “complicated but supportive,” surrounded by people who love Remy deeply. Remy was diagnosed with MSD two years ago, after her 2nd birthday. Her diagnosis did not particularly change her family’s course of action, as they were already supporting Remy through physical, occupational, and speech therapies. Still, the path to understanding what was happening was full of uncertainty. There were moments when people wondered if they were doing something wrong, or when suspicions and hurt feelings arose simply because no one yet had answers. Through that uncertainty, every family member held to the truth that they love, care for, and support Remy completely. Her family has built a strong network of care, not just through therapies and routines, but through shared connection and collaboration.

Today, caring for Remy involves complex logistics across two households. Her medical supplies and medications are duplicated (when possible) and organized so she has everything she needs wherever she goes. Practically speaking, this means managing insurance battles, attending appointments at the leukodystrophy clinic in Buffalo, and working with her special-needs school. The routine can be difficult to break, and traveling is getting harder, but her family and her greater network does it all with love and dedication. Navigating medical decisions and emotional challenges across two households has been complicated, but Remy remains the constant uniting factor. And Remy’s larger family shows up too; in 2024, both grandmas proudly attended the MSD Conference (in matching outfits, nonetheless) celebrating Remy and learning alongside the community.

The MSD community, which the family was pleasantly surprised to discover, has offered an added sense of belonging and understanding. They’ve also found other communities they never expected and connections that wouldn’t have existed without this journey. Relationships change over time, new ones form, and the support grows in ways that continue to surprise. Even on the harder days, knowing how loved Remy is brings strength and peace. And joy still fills Remy’s life in ways that matter most, be it the simple moments, mindful time together, a walk down the street to the park, or the excitement of a classroom.

Although the simplest option can bring as much joy as a grand adventure, Remy’s had big adventures, too! She loved Disney World; the music and lights at Radio City Music Hall during a Christmas trip to Manhattan; and the Leonardo da Vinci exhibit in Buffalo. She also loved visiting the Natural History Museum in Manhattan, which featured a very similar style of immersive exhibit that she also enjoyed. Remy’s travels have been meaningful beyond the U.S., as well, as she had incredible trips to England and Ireland, where she was able to spend quality time with that side of the family (and Alan Finglas!).

Remy is, and always will be, a joyful, radiant “dancing queen!” She is not defined by a diagnosis. She’s defined by her resilience and the love she inspires in everyone around her. As ABBA sang, “I believe in angels, something good in everything I see,” a fitting lyric for someone like Remy, who is a reminder of how much light and love one small person can bring into the world.

Written by Alexia Chilimidos (Graduate Rotation Student, Stanford)