Matthew Wain (MPS I)
The Wain family’s journey with MPS began in 1987 when their firstborn, Matthew, was diagnosed with MPS I. Doctors immediately asked if there were other children, and at just three months old, Matthew’s younger sister, Stacy, was also diagnosed with MPS I. At the time, bone marrow transplants were an emerging treatment. Due to complications from prematurity and weak lungs, Matthew was not a candidate, however Stacy was deemed an ideal recipient.
The Wain family traveled to Iowa, where Stacy became the first patient to receive an unrelated bone marrow transplant at the University of Iowa. Amidst their hope for the future, in 1990 the family also experienced heartbreak: Matthew passed away.
Stacy Wain (MPS I)
Despite the challenges she faced and the loss of her brother, Stacy became a trailblazer for individuals with Hurler syndrome. She graduated from high school, attended classes at a local community college, and embraced independence, eventually living in her own apartment with her beloved cat.
In 2014, Stacy underwent surgery for her gallbladder and spleen. Sadly, six days later, she passed away due to complications from the surgery.
Stacy’s mother, Nancy Wain, remembers her as spunky and spirited, and said that her laugh could light up a room.
“The MPS Society was a blessing to our family with the support it offered,” said Mrs. Wain. “Meeting new friends at conferences made us feel like we weren’t alone, and for that we are grateful.”
