Elechi’s parents attached a stick to a block of wood and gave it to their 2-year-old so she could get a feel for the shape of a violin. She immediately pretended to play. It was only the start on her journey to mastering the dexterity and fine motor skills it takes to make a note, much less play a song.
But playing the violin was Elechi’s dream. She only wanted to make music as best as she could.
Kids with sickle cell disease, like Elechi and like Courtney, diagnosed in utero and whose mom feared she might never read, often suffer cognitive issues. So St. Jude Children’s Research Hospital last year added neuropsychologist Dr. Jennifer Longoria to its staff to conduct and analyze neurocognitive screenings of sickle cell patients.
Screening for things such as reasoning, visual-spatial skills and verbal memory is crucial, especially as a patient transitions from childhood to adulthood, the point at which many sickle cell patients have historically been lost through the cracks of care.
Dr. Longoria is only one addition to the St. Jude sickle cell program. A program that began one month after the hospital broke ground, when the first research grant for $10,000 was made for the study of sickle cell disease.
Think about that — the first grant to St. Jude funded study of a disease that mainly affects African Americans, in 1958, in the heart of the segregated South to a start-up organization promising “to love and care for our neighbor, regardless of color or creed.”
That’s from the Parable of the Good Samaritan and written into the Preamble to the ALSAC Constitution by our founder, Danny Thomas. He grew up poor in Toledo, Ohio, where, at the beginning of the last century, he saw close friends die of treatable diseases such as influenza and tuberculosis.
That’s where his belief no child should die in the dawn of life took root, becoming the very bedrock upon which St. Jude Children’s Research Hospital is built. From that foundation, St. Jude created one of the largest sickle cell programs in the country.
In fact, Yvonne Carroll, the Director of Patient Services in the Department of Hematology at St. Jude, recently told St. Jude supporters the research institution has been part of almost every major advancement in sickle cell disease treatment to date.
In the last 20 years those advances have lifted the life expectancy for a sickle cell patient from mid-20s to mid-40s.
That’s an extraordinary, 100 percent increase. But there is so much work to be done and with the help of supporters, donors and partners such as the Divine 9, and The Links Inc. and its $1 million Legacy Grant, work at St. Jude is showing great promise in the treatment of this disease.
In collaboration with Aminu Kano Teaching Hospital in Nigeria, a newborn screening and sickle cell outreach and awareness program has been implemented.
Closer to home, the development of the mHealth app helps teens transitioning from pediatric to adult sickle cell care with everyday issues such as making appointments with an adult hematologist, reading an insurance card and learning how to fill a prescription and read a pill bottle.
That important transition is a perilous bridge to adulthood for kids like Elechi, now 15 with hopes of becoming a violin-playing doctor one day, and Courtney, who learned to read while at St. Jude and is now a sophomore at Cornell University.
For over half a century, thanks to the help of our generous supporters, we’ve learned more and more about how to care for and treat those with catastrophic blood disorders, not just so they can live longer lives, but so they can realize the dreams those lives are built upon.
Richard C. Shadyac Jr. is President and CEO of American Lebanese Syrian Associated Charities, the fundraising and awareness organization for St. Jude Children's Research Hospital.