After decades of watching their daughter Jasmine, 36, live with sickle cell disease, James and Cheryl Wilson have hope for a cure.
The blood disorder causes red blood cells to become hard and sticky, potentially blocking blood flow and causing severe pain, anemia and other conditions.
But now, new FDA-approved therapies offer new hope by modifying patients own blood-forming stem cells. One treatment, called Casgevy, has allowed many patients to remain free of severe pain crises, and Daniel Cressy, 23, of Metairie was recently described as functionally cured after receiving it.
When James and Cheryl learned about the new therapies, they resolved to do everything possible to help their daughter receive treatment.
“We’re definitely going to get her there no matter what,” James said. “We’re going to make sure that we do everything humanly possible for us to get our daughter this treatment.”
The family is hosting the “Fight Like Jazz” fundraiser Sunday at the Norco Civic Center at 11 a.m. The event is open to the public. Proceeds will help the family with travel and other expenses as Jasmine pursues a multiyear treatment process in Alabama.
The fundraiser will include food, drinks, live entertainment, raffles and prizes. James, the chef at the family-owned restaurant Mama Is That You in Norco, will cook white beans, cornbread, salad, barbecue chicken, fried fish, shrimp stew and green beans. Lunches will also include a beverage.
The family is also accepting monetary donations, sponsorships, raffle items and volunteers. Donations may be made through Cash App at $MamaIsThatYou. For more information, residents can call 985-294-2292.
“The more support, the better,” James said. “My wife and I, you know, we’re doing the best we can with what we have.”
James said Jasmine, mother to 9-year-old Zion, has been a fighter all her life.
“She has a beautiful spirit and a beautiful presence,” he said. “She would give her last to a friend. And when she calls a person her friend, that’s like a sister to her.”
For Cheryl, the chance for a cure for her daughter means everything.
“A cure would not only give me peace, but it would let me know that she has a future,” Cheryl said. “My goal for her is to have the life that I always wanted, you know, to be married, to be happy, to have a household that she could provide for her son.”
Jasmine was diagnosed at 3 years old after her family noticed she was frequently ill and had little appetite. Doctors ran tests and identified the disease. The diagnosis was especially frightening because Cheryl’s sister also had sickle cell disease and later died after living into her 50s.
“It was a scary moment,” Cheryl said.
Over the years, Jasmine has suffered painful sickle cell crises and endured long stays at the hospital. James said sickle cell disease is an excruciating condition, with pain patients have compared to being stabbed in their bones.
Jasmine has experienced strokes, seizures, sepsis and a coma. During one recent hospitalization, doctors found two blood clots in her lungs, according to her parents. The last several months have been difficult. Jasmine has been hospitalized roughly once a month for stays lasting between one and three weeks.
During Jasmine’s most recent prolonged hospital stay, Zion walked into his grandparents’ room with tears in his eyes.
“I miss my mom,” he said. “My mom is in the hospital more than she is home.”
Zion told his family that’s why he takes advantage of any time his mom is home with him.
“And I tell you, that broke me up,” James said. “That coming from a 9-year-old, it was so pure. He’s an awesome kid, and he has the strength like his mother.”
James hopes Jasmine can eventually use her experiences to encourage other people living with sickle cell disease.
“We’d like to create some type of platform for Jasmine to reach out to other sickle cell patients,” he said. “Don’t let it define you.”