Sabrina Lauman was 35 years old and a few weeks pregnant with her second child when she found out she had a rare, fatal dementia. Now, the Edmonton mother’s gift to research could help prevent pain for other families.
In the summer of 2018, Lauman started to show signs of memory loss. She was diagnosed with CJD — Creutzfeldt-Jakob disease — a rapidly progressive neurodegenerative disorder.
Watch below (Sept. 4, 2018): An Edmonton woman has become one of the world’s youngest people ever to be diagnosed with a certain deadly form of dementia. Su-Ling Goh reports.
Doctors didn’t think she would live long enough to give birth but baby Stella was born at 36 weeks by c-section on Jan. 11, 2019.
Lauman died three weeks later on February 4, 2019 — Stella’s original due date.
READ MORE: Alberta mom dying of rare dementia gives birth to healthy baby
Her family donated her brain, placenta, amniotic fluid and cord blood to the University of Alberta’s Valerie Sim.
“Sabrina and her family were incredible throughout this unbelievably difficult process,” said Sim, who was also Lauman’s neurologist.
“They are championing the cause and leading public awareness campaigns and funding and that’s absolutely what we need.”
The associate professor of neurology leads research in prion diseases. Sim explains prion proteins are normal in the human brain, but only become problematic when they misfold.
“Once (the prion) folds the wrong way, it causes its neighbour prion protein to fold the wrong way,” said Sim. “They stick together, cause the next one to fold and it’s like dominoes going through the brain.”
WATCH BELOW: A young Edmonton woman who was diagnosed with a deadly form of dementia shortly after she found out she was pregnant has given birth. Su-Ling Goh has her story. (Jan. 21, 2019)
CJD affects one in a million people. Patients are usually in their 60s, and die within four months of the onset of symptoms.
Lauman was the youngest patient Sim has ever encountered. There are seven other documented cases of pregnant women with CJD around the world.
Sim has already confirmed Lauman’s placenta did not contain any proteins that could have affected baby Stella.
“There’s never been a documented case of transmission to baby. So we’re very feeling very confident that (Stella) is not at risk.”
Lauman’s sister, Marie Alba, and best friend, Katie Wojtowicz, recently spoke about the need for more research at Prion 2019, an international research conference in Edmonton.
“(We want to)… motivate and encourage the brilliant people that are (at the conference) from all over the world to continue their fight to find a cure for CJD,” Alba said.
“And just show people it’s not one in a million; it’s Sabrina. It’s my best friend,” Wojtowicz said.
READ MORE: Young Edmonton mother with rare form of dementia passes away
Family and friends have banded together to help Lauman’s husband, Brent, raise his two daughters.
Stella is now five months old. To her family, she and her three-year-old sister Scarlett represent hope.
“Stella is happy and healthy and Scarlett is loving life, just like Sabrina did,” Alba said.
The family is planning a fundraiser for this fall. More information is available here.
According to the Alzheimer Society of Canada, CJD can be “accidentally transmitted during a medical procedure involving human tissues” but can also be transmitted from exposure to a cattle infected with a variant of CJD known as mad cow disease.
READ MORE: What is mad cow disease? Quick facts about BSE
CJD can also happen sporadically, often in elderly people without warning, or be the result of a genetic mutation.
WATCH BELOW: A young Edmonton mother with a rare, accelerated form of dementia has died. Su-Ling Goh has the details. (Feb. 6, 2019)
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