Avoiding Crowds is Nothing New for 10-Year-Old with Bone Marrow Disease
Fourth grader wants to raise awareness about her rare immunodeficiency disease that increases her risk of infection.
Mireya Griffin started wearing face masks at age nine.
Weekday matinees were the only way to catch a new movie because evading crowds was a must. She traded public school for home school to avoid germs. And she got used to her mom wiping down everything she touched and reminding her to wash her hands. Constantly.
This was Mireya’s normal – pre-pandemic.
Because of a rare and serious autoimmune bone marrow failure disorder, Mireya spent much of last year receiving treatment at Michigan Medicine's C.S. Mott Children’s Hospital to strengthen her immune system. During periods when she was most vulnerable to infections, she practiced her own version of quarantine.
“Social distancing isn’t new for us. We have been trying hard to live that way for the last year to protect Mireya and keep her safe,” Mireya’s mom Traci Griffin says.
“Because of this condition, we had already learned how to slow our lives down.”
In May of 2019, Mireya was diagnosed with severe aplastic anemia, a disease that caused her bone marrow to stop making new blood cells and to function at less than 5 percent of normal.
This means her immune system attacks its own bone marrow – the body’s blood cell-making factory – which leads to dangerously low blood cell counts and a high risk of infection.
As leaders across the globe take measures to limit the spread of the coronavirus, Mireya is spreading awareness about her own immune-compromised condition during National Primary Immunodeficiency Awareness Month.
The fourth grader recently also agreed to be an ambassador for Galens Tag Days, a U-M Medical School fundraiser to raise money for local organizations that serve children in need and for Mott.
“I just want to help other people and tell them about my story,” Mireya says. “You never know what might suddenly happen and change your life.”
An unknown trigger
Mireya showed no symptoms as a young child. But at age nine, she started getting mysterious bruises on her body that didn’t heal easily. One day, she came home from school with a giant dark spot on her face.
She told her mom she had fallen asleep in class – which was unlike her – and that the mark must have been from resting her face in her arm.
“It looked like someone had punched her,” Griffin remembers. “I was sure she was being bullied at school and just didn’t want to tell me.”
That same day, they went to the doctor who immediately did blood draws. The results were alarming: Mireya’s platelet count was at 5,000 – well below the normal range of 150,000 to 450,000.
“That’s when our journey started,” Griffin says.
The findings eventually led Mireya to Mott where she stayed nearly a week for treatment, further testing and to rule out other diseases like cancer.
More research is needed to understand why the disease process that causes aplastic anemia suddenly develops, says Mott pediatric hematologist oncologist Tom Michniacki, M.D. There may be an environmental trigger that ramps up the body’s attacks on itself or a biogenetic reason.
“This is a tough diagnosis for a preteen who is already going through a lot of change during this stage in life,” Michniacki says. “It means being on medicines that might change your appearance, missing school and not being able to see your friends and other difficult lifestyle changes.”
Because of her diagnosis, Mireya had to give up regular swimming, can’t play sports and must manage the side effects from medications that include dehydration, tiredness, an upset stomach and headaches.
Doctors don’t expect her to need a bone marrow transplant but that may change in the future. Among the biggest risks are that medications negatively impact her kidney function or that her condition morphs into leukemia.
But Michniacki says she’s made great progress. Mireya is down from more than a dozen daily medications to just one. Blood draws have dropped from weekly to monthly. Her blood cell count is also up, she hasn’t needed any blood transfusions and immune suppressants are helping her white blood cells do a better job of fighting infection.
If she continues progressing, she may even be able to wean off some of her medicine over time.
Cherishing each day
Griffin says there’s always the worry of a flare up but is happy with how her daughter has responded to treatment, which means fewer doctor visits and no transfusions.
“We do the best we can and make the best of it,” she says. “It’s definitely made our love and bond stronger. Mireya is my hero.”
She says Mireya keeps a good sense of humor, is empathetic and is always thinking of others, which is why she wasn’t surprised that her daughter wanted to help with the Galens Tag Days fundraiser.
Griffin, a nurse, resigned from her job in March in order to care for Mireya at home and limit exposure to the SARS-CoV-2 virus that causes COVID-19.
Recently, the mother-daughter duo has spent a lot of time watching favorite shows like “Gossip Girl,” trying YouTube yoga classes and going on walks. Mireya also enjoys painting abstracts, pottery and spending time with her Chinese crested dog, Pudding.
“This disease has definitely impacted our life and it’s a roller coaster ride,” Griffin says. “But it also makes us cherish each day and focus on what we’re grateful for.