Eddie James Bell Jr. was born on July 29, 1981, and brought love and light to all who knew him until his passing on April 4, 2022. Eddie lived with MPS I, also known as Hurler Syndrome, a condition that brought many challenges but never diminished his spirit. Eddie was a loving son whose courage and positivity left a deep imprint on his family and friends.
“Eddie was a courageous person,” said his mother, Debra Bell. “He never complained about his life. I miss his smiles and conversation.”
Debra recalled how Eddie’s laughter filled the early mornings as he shared jokes with friends over the phone, and his tender conversations with family often continued into the middle of the night. These moments were a testament to his vibrant personality and enduring love for those closest to him.
“Eddie taught me how to love unconditionally,” said Debra. “I want to be brave just like him.”
Despite the limitations of his illness, Eddie was determined to make a lasting impact. Two years before his passing, he started a T-shirt business, Bellafontae the Ambassador, as a way to leave a legacy of creativity and inspiration. This endeavor was a testament to his drive and vision, reminding everyone around him of his resilience and hope. Although Eddie has passed, his designs are still available for purchase in the RARE Aware shop, an online storefront managed by members of the Adult Resource Committee at the National MPS Society.
In remembering Eddie, his family and friends honor not just his life but also the lessons he shared: to be courageous, to love unconditionally, and to embrace life with open arms.
Do you have MPS or ML, or know someone who does? Do you want to share your story? Click here to fill out a submission form for an opportunity to be featured on our blog.
Let us introduce you to Jacob Ray (J.R.) Anton, one of the many faces of MPS.Each year, we remember individuals with MPS or ML who have passed away but remain in our thoughts and hearts. We invite families and loved ones to share their memories with others.
Through the Angels Among Us publication, we encourage you to join the community in lifting up, remembering and honoring their lives as you read their names and reflect upon their memories.
The 2024 publication is accessible below. This publication is available in a smaller format (standard resolution) for faster download or high resolution for those who want to print a copy.
Angels Among Us: Standard Resolution
Angels Among Us: High-Resolution
Families often face difficult and painful losses, and we want to help. If you have a death in your family or need to reach out, please contact us.
The National MPS Society seeks to provide support to all families throughout their MPS and ML journey. As part of this support, the Bereavement Expense Program helps to provide financial assistance through a one-time grant for up for final expenses.
The Bereavement Expense Program provides the grant directly to a funeral home or other professional service provider associated with final expenses, within 90 days following the death of an individual with MPS or ML. Please contact Leslie Urdaneta, Director of Family Support and Communication for more information.
Bereavement Expense Program Guidelines
Each year, we publish Angels Among Us to remember those who have passed away. Please visit this link to learn how to submit (submissions are due by mail with annual membership renewal or through an online form by March 1 of each year) or to view the current edition of this publication.
We hope you find these links to information helpful in your journey. If you have resources to add, please contact us. Disclaimer: the National MPS Society offers these suggested sites for additional information; however, inclusion in this list does not constitute any real or implied endorsement of their content by the Society.
Courageous Parents Network: CPN
