Tammy Smith (fifth from left) stands with a group of walkers before the start of last year’s walk for sickle cell sponsored by A Precious Organization.
ALTON — Three years ago, Tammy Smith’s daughter, Precious Lee, was experiencing a health crisis related to her sickle cell anemia. Her 4-year-old grandson, Melvin Johnson, Jr., also has the disorder.
“I was waiting for someone to do something,” Smith says. “I prayed and God told me it was up to me.”
So she organized a walk, raised thousands of dollars and gave it all away. When she contacted the Sickle Cell Disease Association of Illinois’ Chicago chapter, they told her to find a local organization so it could stay in the community. But there wasn’t one.
“That’s how A Precious Organization started,” Smith says.
Now in its third year, the organization’s annual one-mile walk and fundraiser is Saturday, Sept. 19. Participants can register early or on-site at Alton Middle School. The cost is $25 for adults and $15 for children. The walk begins at 10 a.m. at Rock Springs Park, followed by lunch and games.
Sickle cell anemia is a genetic disorder that damages the red blood cells, causing them to become crescent-shaped and rigid. This makes it hard for the cells to travel through small blood vessels. Less blood flow can cause damaged organs, eventually leading to death from compromised health.
There is no cure, only the treatment of its complications through blood transfusions and antibiotics. Hydroxyurea is the only FDA-approved medicine but it isn’t effective for everyone. A bone marrow transplant is a last resort.
When Precious was born in 1983, doctors told Smith her daughter had anemia. When Precious was 2, she became very ill and couldn’t stop vomiting. Smith ended up taking her to SSM Health Cardinal Glennon Children’s Hospital in St. Louis. That’s when she found out her daughter had sickle cell and was told Precious wouldn’t live beyond age 25. Today, newborns are screened for the disease.
“There was not a lot of information on sickle cell and I had to learn on my own,” Smith says.
Smith advocates for better health care, noting she lives between two Alton hospitals but her daughter has to get care in St. Louis.
“There are no sickle cell specialists in Alton, so we always had to go to St. Louis,” she says. “I might come home, get a call she was back in ICU and turn around and go back. When you have other kids at home, it’s tough.”
Her goal is to educate the community and create awareness. About one in 12 African-Americans are carriers, including Smith and Precious’ father. Sickle cell mainly affects African-Americans but other ethnic groups, such as people of Mediterranean and Middle Eastern descent, also are at risk.
In addition to the walk, there will be raffles for an autographed football from Rams defensive end Robert Quinn and party packages from local venues. Smith declined to say how much money was raised in previous years because of safety concerns, but said the fundraiser has been growing every year. Proceeds help families get to medical appointments and sponsor children to attend Bright Horizons Summer Camp in Hudson, Ill.
For information, contact Tammy Smith at (618) 975-9020 or visit www.apreciousorganization.org. A support group meets 6-7 p.m. the third Monday at the YWCA, 304 E. 3rd St. in Alton.