It is difficult for Carmen Mireles to put into words how touched she is by a recent caring gesture made by students at her school, Bernadine Sitts Intermediate Center, on her family’s behalf. But her emotions help convey her gratitude.
“Anybody who knows me, knows I get emotional about it,” Mireles, an interventionist at BSIC, said through tears. “Especially when I think about what the students did.”
Students from the Student Leadership Team at BSIC recently held a fundraiser for Mireles’ 18-month-old grandson, Clark Mireles, who has methylmalonic acidemia, or MMA, a disorder where the body cannot process certain proteins and fats.
Erin Meng, faculty leader for the student leadership team and fifth-grade communications teacher at BSIC, said the students came up with the idea on their own.
“I came up with the idea of doing a fall fundraising project, but it was all student-led. They chose who they wanted to do it for, and why they wanted to do it, and with very little direction, they put it all together,” Meng said. “It was basically decided that we wanted to help one of our own.”
During October, the students raised $1,300 for the Cure 4 Clark foundation, established by Mireles’ son, Heath, and his wife, Jessica Mireles, to raise money for research into a cure for MMA, which Clark was diagnosed with at 4 weeks old.
“We called it ‘Coins for Clark,’ and they all brought their spare change in,” Meng said, adding they also made it into a contest among all of the school’s homerooms to see who could raise the most money.
“I’m so proud of Bernadine Sitts for doing this,” Mireles said. “The whole school just got involved. And I would like to thank them, but just don’t know how.”
During a recent Thursday meeting, the group of about 30 students shared why they chose to help Mireles and her family.
“Because Clark’s like our own family. He’s Mrs. Mireles’ grandson, and he’s a little kid that is part of the Bulldog group,” Anthony De Paz said, referring to the school mascot.
Eric Perez said the money will be used for other kids with the disorder.
“We can help them by raising money so the people that are researching on how to find a cure, they finally will find one and they won’t have to deal with MMA anymore,” Eric said.
One student said they chose to raise funds for the foundation because they want Clark and other kids like him to have a normal life. Others said they did it for Mrs. Mireles.
“She is a good teacher, and she is really nice to everybody, so she deserves us to help her find a cure for her grandson,” Isabela Reyes said.
Kaylee Stubbs agreed.
“It makes me feel good that we helped her family because she comes to work with a smile on her face every day, even though she has this stress in her life,” Kaylee said.
According to the foundation’s website, cure4clark.org, the effects of MMA, which usually appear in early infancy, vary from mild to life threatening.
Affected infants can experience decreased muscle tone, anorexia, delayed development and recurrent infections.
Long-term complications can include feeding problems, intellectual disability, chronic kidney disease and inflammation of the pancreas. Without treatment, the disorder can lead to coma and even death.
Treatment consists of a strictly controlled diet that restricts protein and/or the four offending amino acids (isoleucine, valine, methionine and threonine).
This requires Clark’s parents to constantly monitor what he eats and how often he eats.
“Everything he eats has to be measured and pre-planned,” Mireles said. “He has to be woken up every three hours at night to eat, ever since he was born.”
Clark’s mother, Jessica Mireles, said the only reason they were made aware of Clark’s disorder is because they happened to bank his cord blood.
“Every newborn is screened for a series of diseases, and the screen that we got through the cord blood bank was more sensitive, so it actually caught the disease,” Jessica Mireles said. “If we had not ordered that supplemental screen, Clark would not be with us today.”
There is no cure for the disorder, but according to the website, Dr. Charles Venditti’s team with the National Institutes of Health currently is researching a cure through the avenue of gene therapy.
“He will go to NIH to enter the study when he’s 2 for the research,” Jessica Mireles said.
She credits early screening for helping prevent a lot of issues Clark might have developed had they not been made aware of the specific diet he had to be on.
“Newborn screening saved his life,” she said.
When asked what it meant to her and Heath when they found out what the kids at BSIC were doing, Jessica got choked up, too.
“We were just absolutely floored that they would want to get involved in our organization. We are a fledging organization. We’re young and new, and for them to want to get involved and to help save my baby is just unbelievable,” she said. “We are just so grateful for their help and support. They’re just unbelievable kids. They’ve got such big hearts.”