Toddler fights incurable disease
Torie Brady is too young to know anything about the medical condition that is killing her.
“Why can’t it just be me?” Torie’s grandmother, Cheryl Moscrip, pleaded Sunday.
Torie, with her red hair and mouth full of baby teeth, has mucopolysaccaridosis type 1, or Hurler’s disease, which is a genetic disorder in which Torie lacks a certain enzyme responsible for breaking down cellular waste.
Typically, children with Hurler’s disease don’t live past 10 because of premature organ damage. There is no cure.
Torie’s family calls her disease the “$750,000 word” because that’s the price tag for a bone marrow transplant that may give Torie the chance to live past elementary school.
“And that’s just the beginning,” Torie’s mother, Lexie Brady said.
Torie receives weekly enzyme injections at St. Mary’s Hospital, but the injections won’t halt the progression of the disease.
Moscrip, a pediatrics nurse at St. Mary’s, went as far as to say she “wishes” her granddaughter had cancer because at least there is a treatment for it.
The good news is a Minnesota person, who the Brady family does not know and may never meet, is a bone marrow match for Torie. No family member matches Torie, Lexie said.
The bad news is, the family doesn’t know if the transplant will ever happen.
“Every day, we are waiting by the phone,” Moscrip said.
Except on Sunday. That afternoon, family, friends and community members held a chili cook-off to raise money toward paying for the bone marrow transplant that could save Torie’s life.
If the day comes when Torie gets her bone marrow transplant, a risky procedure, the family is ready because they are confident Torie will handle anything.
“She can do this,” Moscrip said. “She’s a tough, strong-willed kid.”