Autumn M. was diagnosed with Mucopolysaccharidosis VI (MPS VI) at just 18 months old, at a time when no treatments were available. In 2000, she joined the Phase I clinical trial for Naglazyme, an enzyme replacement therapy that transformed her life. “My first infusion was on November 8th, and it started a whirlwind of an adventure,” she recalls. “I made connections with other MPS VI individuals who I still keep in touch with regularly.”
Despite challenges, including multiple surgeries and a significant loss of independence, Autumn embraces her life with creativity and determination. She works full-time for the National Guard, finds joy in hobbies like reading, video games, and theater, and cherishes her visits to Disneyland.
Autumn also gives back to the MPS community as Chairwoman of the National MPS Society’s Adult Resource Committee, a role which she has been in for four years, and where her leadership has made a lasting impact.
Sheri L., a fellow committee member, said: “Autumn has done a phenomenal job for several years now. She always keeps us on time, on topic, and engaged, which is not always an easy job with our group! She is caring and is a great friend to us all. She works hard and deserves recognition for all she does for us, our committee, and the MPS Society.”
For the National MPS Society and all who know her, Autumn’s journey exemplifies the resilience within the community and the profound impact of combining science, advocacy, and the human spirit.
Autumn says it best: “One of my favorite quotes is from Albert Einstein, who says ‘I have no special talents, I am only passionately curious.‘ There is no creativity without curiosity. No matter our circumstances, a little creativity can spark joy in our lives.”
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.
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.
For many individuals, independent living means having every opportunity to be as self-sufficient as possible.
