Lucas was the youngest of four children. From the start, he stood out—not just as the baby of the family, but as the only one diagnosed with Sanfilippo Syndrome (MPSIII). Lucas’s family’s journey to understanding his condition was long and winding, stretching over eight years filled with visits to geneticists and specialists. It wasn’t until 2006, when Lucas was eight years old, that they finally received his long-awaited diagnosis.
With a diagnosis in hand, Lucas’s family made a decision to focus on the present and ensure that Lucas was comfortable and happy. Alongside caring for Lucas, his family felt compelled to take action. Their fundraising efforts began in earnest shortly after his diagnosis, driven by a desire to bring awareness to MPS and ML research.
“We have hosted numerous yearly awareness events, galas, golf outings, and walk/runs in addition to running an online clothing line called Lucas Gear,” said Lucas’s mother, Stacey Montgomery. “[We did all of this] in hopes of bringing awareness and raising funds for research for MPS and ML.”
Despite the challenges of MPSIII, Lucas was a beacon of positivity.
“Lucas brought awareness to his syndrome, always smiling and inspiring others to be courageous, positive, and strong, and to fight for what they believed in,” said Stacey. “He had a tremendous amount of love for his family and made sure his family felt as strong as he was.”
Despite his contagious joy and strength, Lucas passed away in 2018. His family hopes that his story will inspire others to embrace their unique challenges and rise above perceived obstacles, and that his legacy of love and strength will create a brighter future for all.
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Benji C. is a strong, confident, self-assured, loud, and determined 8-year-old with MPS I.
When Benji was a baby, his parents had some unique concerns about his health and brought them to their doctor. The doctor told them that what Benji was experiencing was normal for boys his age, and not to be concerned because all kids develop differently. Then, at 15 months old, someone suggested to Benji’s parents that his coarse facial features might be an indicator of a genetic disease.
After an expedited trip to a geneticist, Benji was diagnosed with Hurler Syndrome at 16 months of age. He immediately started Enzyme Replacement Therapy (ERT), and at 18 months old he underwent a Bone Marrow Transplant with cord blood.
Benji’s transplant recovery was a long one. He dealt with complications such as a Graft-versus-host disease (GHVD) skin infection and auto immune hemolytic anemia. Benji’s family did not realize how long of a journey they would have post-transplant, but they learned to celebrate all the little wins along the way. Still, it took Benji two to three years longer to do things that other children his age might, like learning to talk and getting potty trained.
“I would never have expected us to be in as great of a place as we are,” said Benji’s mother, Tamara. “Despite his surgeries for carpel tunnel, umbilical hernia, hip realignment, and guided growth of his knees, he is one of the most positive, grateful children I know. He loves life, singing, and school, and while this isn’t a journey we would have wanted to be on, we would not change our son in any way.”
Let us introduce you to Jacob Ray (J.R.) Anton, one of the many faces of MPS.
