Ernestine Diamond, who dedicated life to the awareness of sickle cell disease, dies at 94
Editor’s note: This feature is part of a weekly focus from The Star meant to highlight and remember the lives of Black Kansas Citians who have died.
Ernestine L. Diamond was merely three months old when she suffered her first health crisis related to sickle cell disease.
According to family, it was the middle of the the night and her mother rushed her to the nearest the doctor’s office for help. The doctor, who said he didn’t treat “colored people,” took one look at the infant and determined she had a brain fever.
“Take her home because she was going to die,” Diamond’s granddaughter Jasmine Hunter said the doctor instructed. Her mother along with her grandmother and two aunts prayed for her to get better.
That was the first of several mysterious illnesses Diamond had as a child: At the age of 4 she had to learn to walk again after they thought she had suffered a stroke.
“Her mother told her that as soon as she got well that she was going to let her sing a solo in church to help her forget about the pain,” Hunter said.
When she was five years old, Diamond joined the St. Stephens Baptist Church and began singing in the children’s choir. She remained with the church throughout her life and was a member of the Young Adult choir, which later became the Inspirational Choir, as well as the Baptist Young People’s Union and the Miriam Circle. She also was a teacher of the Young Adult Department Sunday School class.
She believed in the power of prayer and attributed prayer and her faith on sustaining her throughout her life, especially on days when the pain was so much that she couldn’t move. She would pray until the pain subsided.
It wasn’t until she was 21 years old, during another health crisis, that she was diagnosed with Sickle cell disease. After her diagnosis, she devoted her life to raising awareness of the disease and helping support others who living with it.
Diamond, born June 10, 1927 in Kansas City to Dovie Miller and Godfrey Banks, died April 17 at the age of 94.
Though in pain for most of her life, Diamond tried not to let the disease limit what she could do, Hunter said. In her 20s, she planned trip to Israel even though doctors told her she couldn’t go, that the trip could kill her.
She had grown tired of hearing doctors tell her “she wasn’t going to make it” or that “she was going to die” from the illnesses.
“She just prayed about it and you know, she felt safe enough to go,” Hunter said. “And it was one of the best trips she’s ever had.”
Diamond loved to travel and went on trips to 12 European countries, Jerusalem and Israel, family said.
She’d go on to marry Bradley Jackson and have four children.
Eventually the doctors who told her that she couldn’t do things because of her disease started calling her asking for advice on how to other patients with the disease should be taking care of themselves.
“She took very good care of herself even though she had crises,” Hunter said. That led her to developed the Sickle Cell Action Through Technology foundation to help bring awareness of the disease.
Diamond even wrote a book about the disease that she hoped to publish. The family wants to follow through with her wishes once it’s edited.
“She wanted to bring awareness to (the disease), she wanted to educate people and she also wanted to try to help alleviate the suffering,” Hunter said.
She said her grandmother wanted to teach people that such things as what they ate or how they took care of themselves mattered and could help them live longer.
In 2003, the Sickle Cell Disease Association of America recognized Diamond as probably the oldest person in America living with sickle cell.
After 23 years of marriage to Jackson, the pair got divorced and she later married Sam Diamond. They remained married 12 years before he died.
“She was, in my opinion, one of the strongest women I’ve ever met in my life because she endured a whole lot all of time,” Hunter said. “She was tenacious. She just kept going. And you know, she didn’t have any quit in her.”
Diamond is survived by her four children Donald Jackson, Michael Jackson, Patricia Ann Farr and Bradley Jackson as was 17 grandchildren, six great grandchildren, her church family and friends.
Other remembrances
Helen Jean Shaw
Helen Jean Shaw, a longtime school secretary for the Kansas City Public School District, died April 8, the family said in an obituary, shared by Thatcher’s Funeral Home. She was 94.
Shaw, who was born Oct. 16, 1927 to Harry and Thelma Hawkins Hopkins, grew up in Kansas City, Kansas, and graduated from Sumner High School in 1945.
She earned her associates degree in education from Kansas State Teachers College in Pittsburg, Kansas.
“She decided she didn’t like teaching so she decided to be secretary,” said Terry Poke, a cousin and her caretaker. “She enjoyed the school system because she enjoyed the kids — period.”
Shaw was a religious person and attended Metropolitan Baptist Church in Kansas City, Kansas, for several years before she moved to Kansas City and joined the Rosser Simpson Christian Methodist Episcopal Church, where she was a member for more than 50 years.
There, she met Charles Shaw and they married on Feb. 25, 1966. They were married for 24 years before he died in 1990. Prior to his passing, she retired from the Kansas City school district to take care of him. She returned to the district subbing from time to time, Poke said.
Shaw was involved with the NAACP and the Zeta Phi Beta Sorority where she was as life member, a Zeta Dove, which recognized her service to the sorority of more than 50 years, and an Amicae sponsor.
Shaw is survived by her stepson Charles Shaw Jr. of Kansas City and stepdaughter Carolyn Smith of Phoenix, Arizona, stepbrother Robert Jackson and several grandchildren and great-grandchildren.
This story was originally published May 15, 2022 at 5:00 AM.
