SAUGUS — In Aug. of 2021, Diandra DeFreitas achieved one of her biggest dreams in life: becoming a mother. However, this dream came with complications that no one was prepared for.
“My grandson was born in August,” said Kerry Jewell, Diandra’s mother. “She [Diandra] ended up having a traumatic birth and really hemorrhaged. She was borderline in need of a blood transfusion.”
Jewell explained that since her daughter was of a young age, the doctors felt that the transfusion wouldn’t be necessary, but the complications didn’t end there.
“She was young and healthy, but they did end up giving her the COVID-19 vaccine after she gave birth. Certain doctors said that the combination of her weakened state, the hemorrhaging, blood loss, and immediately receiving the vaccine is what got the ball rolling with what’s wrong with her,” Jewell said.
She continued that no one knew instantly that something was wrong. The first year after her pregnancy, Diandra had been weak, and the family had chalked it up to her being a new mom and not getting a lot of sleep.
“She did contract COVID twice during that first year, but she was just mildly sick, nothing crazy, just a cold,” Jewell said.
Diandra started showing other symptoms once her son was around a year and a half, and by the time his second birthday approached, it was clear something was wrong.
“To this day, there’s no specific doctor that can help her. They call it chronic fatigue syndrome (CFS), and she also has the post-exertional malaise (PEM) part of it, which causes a lot of problems,” Jewell said.
CFS, also known as myalgic encephalomyelitis (ME), is a serious and often long-lasting illness that keeps people from doing their usual activities. There is no cause or cure, meaning that the care involved is treating symptoms that most affect the person, according to the Centers for Disease Control and Prevention (CDC).
PEM is a symptom that causes the worsening of other symptoms after a physical or mental activity that was previously tolerable, according to the CDC.
“She’s housebound. She cannot stand longer than five minutes. If she does have to leave the house, she needs a scooter, and she has to wear headphones on her ears because of the brain activity. Anything that stimulates her brain causes her to be in a crash state,” Jewell said.
She explained that they had to seek help from a functional medical doctor and that she also sees a neurologist in Boston, but it has been a struggle to find a solution.
“They don’t know what else to do, because there’s such little information on this. They have nothing else to do but offer types of medications that you would take for anxiety and things like that,” she said.
Jewell explained that the functional medical team isn’t covered by insurance and that all of this has been paid for out of pocket by the family.
“You have to pay for every test,” she said. “She’s had more things tested than probably any normal person. They’ve run tests that you wouldn’t even know existed.”
She continued that everything they’ve raised so far has gone towards all medical expenses, whether that be the tests or doctor visits.
“My hope is that we can just get awareness. This has destroyed me as a mother. She was so excited to be a mother,” Jewell said. “She was a nanny before she became a mom. She couldn’t wait to have her own baby…It’s just ripped my heart out to see her like this”
She said that Diandra’s husband, Justin DeFreitas, was able to work from home over the past few years to help with everything.
“He has to do everything. He takes care of the baby, grocery shops, runs errands, does the laundry, cooks and cleans, waits on my daughter hand and foot. He lost his job this past summer. We’re hoping he has some prospects for another remote job soon,” she said.
Jewell wants to raise awareness for her daughter’s condition and for anyone else suffering from ME/CFS with the hope that more research can be done in the future.
To help the DeFreitas family with medical expenses, you can donate to their GoFundMe. All money raised will go towards Diandra’s battle against ME/CFS.
