OAKLAND, Calif. - Six years ago, Evangelina “Evie” Padilla Vacarro was born with an extremely rare disease that left her unable to fight off infections.
Evie, a twin, was sickly from the start of her life while her sister thrived.
Evie’s mother, Alysia Padilla Vacarro, knew something was wrong, though doctors and others told her she was likely overreacting
“I was told that it was the stress, or the fear of being a new mom, but I just knew something wasn’t right,” said Padilla-Vacarro of Corona, Calif.
Indeed, something wasn’t right.
Evie was born with something called severe combined immunodeficiency. It’s also known as “bubbly baby” disease because in the past children were kept in a sterile plastic bubble to protect them from getting sick.
Evie had absolutely no immune system.
Even the common cold could kill her.
Her parents wore face masks to protect her from germs.
Kissing their new baby was out of the question.
The prognosis was devastating: untreated children born with the disease usually die in the first two years of life.
“There’s no way to describe how worried you are,’’ her mother said. “You think that your child is not going to live. That is not worry, that is a nightmare. It’s a living nightmare.”
Padilla-Vacarro and her husband Christian Vacarro said they were beyond despair.
“There’s no worse feeling than seeing your child suffer in any way,’’ the father said.
But darkness turned to hope when the couple brought their newborn to UCLA, where a groundbreaking treatment had been developed following three decades of stem cell research by Dr. Donald Kohn.
There, Evie underwent a stem cell transplant that took her own blood stem cells, genetically re-engineered them, and returned them to her body. These re-engineered stem cells created a new blood and immune system.
Within about six weeks, Evie’s new immune system developed without side effects. Her T cell count began to rise and her ability to fight off illness and infection grew stronger, her parents said.
Then came some good news: the procedure had worked and the couple could hug and kiss their daughter, and take her into the outside world.
“To finally kiss your child on the lips, to hold her, it’s impossible to describe what a gift that is,” Padilla Vacarro said.
Now, more than four years after her initial treatment, Evie's mother said her daughter is thriving. She recently flew on an airplane, rode the cable cars in San Francisco and attended a large book-signing event in Oakland. Her mother doesn't panic if he daughter touches a dirty elevator button or needs to use a germ-filled public restroom.
Evie is doing so well she is preparing to go to kindergarten this fall.
Evie’s gene therapy procedure was supported by the California Institute for Regenerative Medicine in Oakland, which has also backed curing 40 other sick children with stem cells.
The institute was created following the passage of Prop. 71 in 2004. The measure made conducting stem cell research in the state a constitutional right. And authorized the sale of general obligation bonds to allocate $3 billion to stem cell research and research facilities.
The institute has contributed $2.6 billion to advance the fight against chronic diseases, including: diabetes, heart disease, HIV/AIDS, sickle cell anemia, Alzheimer’s, Parkinson’s, and ALS.
But there are only a few more years of funding left. .
Don Reed, the author of a new book, “California Cures: How the California Stem Cell Program is Fighting Your Incurable Disease,’’ said backers of stem cell research plan to ask voters in the November 2020 election for $5 billion in bond money to continue the institute’s work.
“Lives have been saved, and suffering eased, because California stood up for stem cells in 2004,” Reed said. “Now as we approach the end of that (2004) voter-approved program, it is vital that everybody knows the story of (the institute) and why we must renew its funding.”
Evie’s dad is all for that.
“She is going to be fine. She’s going to grow up and live a healthy life. It’s not just Evie. Forty other little children are alive and well (because of stem cell procedures) and they are going to stay that way.”