MEMPHIS, Tenn. (localmemphis.com) - St. Jude Children's Research Hospital was awarded the $1-million Legacy Grant through The Links Foundation that will help advance three sickle cell disease programs. Sickle cell disease is the most commonly inherited blood disorder in the United States.
Approximately one out of every 365 African-American babies born in the U-S has sickle cell disease. A number of health problems can develop such as anemia, bacterial infections, and stroke.
The first grant St. Jude ever received went to sickle cell research, and the fight to find a better cure continues today.
“St. Jude started in 1962 and it started on a hope, a hope that no child would die in the dawn of life from a catastrophic disease,” said Dr. James Downing, President & CEO of St. Jude.
One of those catastrophic diseases is sickle cell; an inherited blood disorder most common in African-Americans.
“I vividly remember as a medical student taking care of sickle cell patients,” said Dr. Downing. “They have strokes and they have renal failure and they have blindness.”
The Links, Incorporated, one of the nation’s oldest and largest African-American women's volunteer organizations, awarded St. Jude with the $1-million Legacy Grant to help with sickle cell research, education, and programs.
“We focus in particular on health and health disparities. Sickle cell anemia is one of the health disparities,” said Dr. Glenda Newell-Harris from The Links, Incorporated.
“We have managed the symptoms. We have made their life tolerable and allowed them to get into adulthood but when they leave St. Jude they start dying,” said Dr. Downing.
During Thursday’s check presentation to St. Jude, mother Pam Madu spoke to the audience about the birth of her daughter. How it was love at first sight, then she got the devastating news her beautiful baby girl had sickle cell disease. St. Jude became the Madu family's new home.
“St. Jude just became an intricate part of our life,” said Madu.
Madu knew nothing about sickle cell disease when her now 13-year-old daughter Elechi was diagnosed with it as a baby.
“We panicked. Because my husband has a degree in biology and I was a science teacher, so we knew enough to be scared,” said Madu.
Doctors at St. Jude began treating Elechi. She was hospitalized more than 15 times by the age of two.
“Elechi kept getting worse and St. Jude was so on top of it,” said Madu.
She said Elechi's immune system was weak and as she stayed sick. St. Jude doctors tried different treatments and medications, determined to help Elechi get better. It paid off.
“We went from almost 20 hospital visits to like two overnight. It was amazing,” said Madu.
Elechi is a thriving 13-year-old straight A student with a black belt in karate and aspirations of becoming a researcher at St. Jude.
“Before the age of five she was supposed to have a stroke, but she didn't. And it's because of the good Lord and St. Jude,” said Madu.
St. Jude cured a sickle cell patient years ago through a bone marrow transplant. But doctors say it's an incredibly toxic approach and can cause more problems. They're working to find a better cure.
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