When most parents of 21-year-olds were helping their offspring with career choices, Dr. Tondelayoi (“Toni”) Westbrooks was burying her daughter Laya, and doing her best to address the physical decline of her second daughter, Jade.
“People ask me what it is like to have two daughters suffering from a terrible disease, and I tell them it is like fighting a lion with a switch—all you have is hot water, warm heating pads and pain medicine,” Toni said.
`The Jefferson City, MO,-based Lincoln University professor had the sickle cell anemia trait as did her first husband. Their daughters were born with full-blown sickle cell anemia, which caused Laya’s death in 2017 at age 21.
By then, the disease had attacked the lungs of younger daughter Jade and had begun to affect blood flow to her brain. Treatments that reduce the frequency of painful crises and the need for blood transfusions did not work for either daughter. All that was left was blood transfusions. They are critical to increase the oxygen-carrying capacity of blood and reduce circulation obstruction that can injure organs and cause intense pain.
Blood donations from someone of the same race or similar ethnicity and blood type are the most effective way to help a patient in a sickle cell crisis. Since the majority of the 100,000 Americans with sickle cell are of African descent, blood donations from African-Americans are critical.
“Early on, I became involved with the Red Cross’ Dr. Charles Drew Program to raise awareness among the African-American community about the critical need for them to give blood,” Toni said.
Named in honor of an African-American physician who developed ways to process and store blood plasma, the program recruits local community leaders, like Toni, to raise funds, speak to local organizations, line up blood drives and help support those with sickle cell disease. At only 12 years of age, Laya and Jade, then 5, went before the Charles Drew members to tell their story of dealing with sickle cell.
Ever the activist, Toni tapped organizations within Lincoln University to help. Two women’s sororities – Zeta Phi Beta and Sigma Gamma Rho---agreed to conduct blood drives on campus. The men’s fraternity Phi Beta Sigma signed on. Recently Toni also became a member of the Red Cross board in Central and Northern Missour to support its many services, including Red Cross efforts to increase the nation’s depleted blood supply.
While transfusions typically help sickle cell patients manage the disease, for Laya and Jade there was an additional complication: their veins were so small that medical staff struggled to find good veins they could access.
Both made medical history. “Laya was the first child in the history of the University of Missouri Hospital system in Columbia, MO, to have transfusions of red blood cells using a double port (with two access points), and Jade, who had transfusions every month for 10 years, was the youngest person to have a double port,” Toni said.
These were temporary fixes, however. Time and options were running out for Jade. Toni realized that only a bone marrow transplant would save her.
Initially, Jade was too sick to proceed with the transplant, and when she was finally ready in March 2020, COVID 19 had arrived. The surgery was postponed.
Toni took that time to figure out how she was gong to cover the costs of this very expensive surgery and how she and Jade would live in temporary housing for months during Jade’s recovery regimen at St. Louis Children’s Hospital.
The answer came in the form of an old school bus. Hundreds of donors from around the world contributed to convert the bus into a functioning one-bedroom apartment with a kitchen, shower and washer-drier unit.
“The generosity of strangers amazed me,” Toni recalled. “Jade had to have all dental work done prior to the surgery—the dentists gave us thousands of dollars in free dental work. I posted on Facebook that my daughter needed a transplant, and within hours, people had pledged $1,600 toward the cause. Individuals from all over the world pledged even more by giving directly to the hospital to cover our bills. Converting the van was gong to cost thousands, but donors called the mechanic and paid for the conversion.”
The school bus became home to Jade and Toni for 120 of the 179 days they spent in St. Louis. They hooked up in a Barnes Jewish Hospital lot for free and ran a generator. Water was delivered by Toni’s husband and family members who live in St. Louis. Their life on a school bus became a news item when the hospital named Jade the winner of a trip to Florida, and St. Louis television crews showed up to do interviews at the school bus.
“One evening a man came knocking on our door, and when I opened it, he thrust a packet at me and walked away,” Toni said. “I opened the packet and discovered wads and wads of cash. I raced after the man who said he had seen the coverage and collected the money from the many people who wanted to help. I was just overwhelmed.”
Now 18 years old, Jade has almost fully recovered and is finishing high school and looking forward to a future she thought she would never have.
On the day of Jade’s surgery, Toni defended her Ph.D. decertation and earned her doctorate in educational leadership, with an emphasis on special education.
After all the pain and trauma of her daughters’ struggles, Toni has one message: “I believe in giving back and strongly believe that God put on this earth to help others. That’s it. You should leave the world a better place than when you arrived.”